Why Does Our Culture React So Negatively to Disability Activism?

Disclaimer: This article is written from my perspective as a young, disabled adult that lives in New Zealand. Whenever I mention “culture” in this article I am referring to western culture, specifically western culture as adapted to by New Zealand. I haven’t done much traveling so I can’t say if other countries with similar cultures react the same way, however, I have seen accounts of similar experiences from activists worldwide.

This is also my experience as someone with an invisible disability. I’m sure that everyone’s experience is different, and some of the readers of this article may not relate to what I have written no matter where they live. This is awesome because we all have our own unique story. I make a lot of generalisations in this article, and those generalisations certainly don’t apply to everyone. I am just expressing my experience in the best way I can.

I have experienced widespread chronic pain since the age of seven. I went from being a relatively “normal” (if accident-prone) girl to experiencing severe pain every day of my life. Slowly my condition deteriorated until I required the use of walking aids for a large chunk of my life (and I still do). I went through years of bullying and what I can only consider being “medical abuse” (mistreatment from medical professionals; such as being called a faker and being forced to take medication that caused severe side effects), which almost broke me.

As I grew into my voice I decided that I would be an advocate; not only for myself but for everyone with similar experiences to mine. I started with the basics: social media. Whenever I noticed an injustice towards people with disabilities, whether it be against me directly or against someone else, I would speak out. I then started writing articles about my experiences, which I love. And now, I’m a part of a panel run by the local Ministry of Education aimed at making education more inclusive to disabled students. This is just the beginning of my advocacy journey, and I can’t wait to see where it leads me in the future.

Throughout my advocacy efforts, I have noticed that many people on social media bristle when advocates like me bring up serious issues addressing the disabled community. I have been dismissed, insulted, and verbally abused online by people who will do anything to defend injustices against vulnerable people. I decided recently that I wanted to analyse their viewpoint and understand why, so I thought the perfect way to do this would be to write out my analysis and my thoughts in article format so I can share it with you all. This article addresses the question featured in the title: Why does our culture react so negatively to disability activism?

Ableist preconceptions that exist culturally regarding disability:

When we take a deep look at how the topic of disabilities is covered in the media, it is actually quite shocking. For example, I have an issue with the tv show called “The Undateables”, which is a dating show about people with disabilities finding love. While I believe that disabled people (including myself) should have the opportunity to find love just like everyone else and appreciate the representation this show provides, I don’t support that show because of the title’s connotation and denotation. Using the term “undateable” to describe an entire group of people is downright insulting. You’d never see a media organisation calling someone who’s from any other minority group (but who is not disabled) “undateable”.

I am not “undateable”. My brothers are not “undateable”. My friends are not “undateable”. No person should be labelled “undateable” for something they can not control. This is just one example of society’s ingrained ableism that many people are blind to.

We’re to be pitied, but not listened to. This is another ableist preconception I’ve witnessed. Often disabled people are portrayed to be these pitied, helpless beings who need charity, not a voice. We must be passive to maintain this image otherwise we are labelled as “trolls” or “entitled”. I’ve been told that if I can walk and/or articulate then I’m not disabled enough to complain about facing injustices. That is so incredibly wrong, especially since if people like us who can speak up don’t, then who will?

Ableist preconceptions that exist culturally regarding disability

I’ve also been told that I should stop using my disability “as my personality” when I responded to a post on social media. Actually, I’ve been told this multiple times. That is one of the most ableist things I have heard to date. I’m sorry that I can’t “turn off” my disability. I experience pain every single second of my life. It impacts my ability to sleep, my ability to sit, my ability to stand, my ability to walk, my ability to work, my ability to study, and my ability to socialise. Am I supposed to forget that? Not only that, but why shouldn’t I fight for injustices against people with disabilities to end?

Invisible disabilities make people uncomfortable:

Many people feel like they have to see something to believe it, which is fine until you start talking about invisible illnesses and disabilities. If I’m not using my cane, you couldn’t tell I’m disabled just by looking at me. And yet, my disability impacts all aspects of my life, whether I’m using my cane or not. Many times I have had people accuse me of faking my disability on my activism posts, telling me that I don’t “look” disabled and that I’m just “lazy”. I’ve had to grow up listening to this from my peers throughout my childhood so it doesn’t bother me as much as it used to. I’ve become desensitised. However, this behaviour needs to be addressed, because next time it could be said to someone who is not experienced dealing with this kind of harassment.

The disability rights movement isn’t as “trendy” as other human rights movements:

This point may be a bit controversial, however, I think it’s important to talk about. As a disclaimer, I’m not trying to tear other movements down to lift up disability awareness, I am simply comparing current cultural awareness and coverage of different movements in the mainstream media. I am not trying to say that either of the movements I compare disability activism to below deserve less attention, because I believe they deserve all the coverage they are getting, if not more. I also believe that the disability awareness movement should have just as much coverage as these movements so that they’re all at an equal platform.

LGBTQIA+ pride, for example. We have pride parades and Pride Month, events dedicated to raising awareness about discrimination against people within the LGBTQIA+ community, and LGBTQIA+ merchandise specifically aimed at raising awareness and money for charities that support this goal, which is a great cause. Companies change their logos or advertising media to reflect these events to show their solidarity, which is amazing. There are even multiple public spaces in my country that have been painted rainbow to celebrate Pride, such as town squares and selected zebra crossings. Feminism is another example. We have the women’s march, international women’s day, feminist merchandise, and a tonne of events targeted at raising awareness about discrimination against women. Both of these movements are prominent in pop culture and get a large amount of media coverage, as they should.

The disability rights movement isn't as "trendy" as other human rights movements

I just wish we could see the same effort go into raising awareness about discrimination against people within the disability community, as well as a similar amount of media coverage of these efforts. Where are the disability awareness parades? In my country, there are none. There are disability awareness days, however, I have yet to see the mainstream media address them. The inequities of identity awareness in our culture is definitely an interesting topic to think about.

Disability activism is not “convenient”

Part of disability activism is confronting people who are taking advantage of disabled people just to make their own lives more convenient. For example, calling out people who park in disabled parks without a permit, or sharing public service announcements about misuse of disabled toilets. When I mention the misuse of disabled toilets, I don’t mean them being used by someone with an invisible disability. People with invisible disabilities have as much right to use the disabled toilet as every other disabled person. When I mention the misuse of disabled toilets I’m talking about the people who have no impairment what-so-ever (or aren’t assisting someone with an impairment) who just use the disabled toilet just because it’s there.

I have witnessed people without disability parking permits parking in disability parking many times. When called out on it, their response is often “I’ll just be a few minutes.” That is one of the most common responses, along with resorting to verbal abuse when someone mentions their lack of a permit. I have made posts about these occurrences on my town bulletin Facebook pages, and every single time I have received abuse from people who see no issue with parking in one of these parks without a permit. I get told that I’m entitled, even though I paid for my permit to use those parks, while the abusers that park there don’t. How am I entitled for asking to use a service that I pay for?

Privileged people who lack empathy don’t like having their privileges, even the privileges that aren’t rightfully theirs to begin with, taken away.

There’s also the issue of inaccessible public spaces or stores. Renovating an area to ensure it is accessible by everyone may not be cheap, but it is necessary. Calling out local businesses that exclude disabled people from their stores and spaces is extremely important.

Disability activism is not “convenient” especially when it addresses the misuse of disability parking and disability toilets

During my advocacy journey (despite it being a short one at this point, I only started about 4 years ago) I have faced a lot of feedback. Some of it good, some of it bad, most of it respectful. However, I have also faced a lot of abuse, mostly online, for standing up for what I believe in. Sometimes, for a brief moment, I consider giving up, but then I remember the people that have thanked me for speaking out. This article is dedicated to them. I long for a day when disability activism is no longer controversial, and people no longer have to fight for their voices to be heard.

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

December 7, 2019December 3, 2019

How to Keep Moving! (Chronic Illness and Exercise)

Though exercise is an important part of maintaining our health, exercising regularly is more difficult for people living with a chronic illness than it is for many others. However, with a doctor’s approval (of course), regular exercise can become manageable to some extent, while being highly beneficial for many aspects of people’s lives. For people with chronic illness, it can be even more crucial to regularly do some light physical activities, in order to increase their heart rate within safe parameters.

Some of the benefits of exercise for people with chronic illness include bone and muscle strengthening, weight control, improvement in mental health and mood, reduced chances of falls, as well as reducing the risk of heart disease, diabetes, and metabolic syndrome (as well as helping to manage the symptoms of these conditions). As a whole, regular exercise can help preserve your lifestyle.

How to get started:

If you’re a person suffering from some kind of chronic illness, then the topic of chronic illness and exercise is surely familiar to you. The first thing we ask ourselves is how to even begin exercising. The first thing you should do is speak to your doctor. This is very important, as they will give you the best advice that will match your medical condition and capabilities. Your doctor will advise you on how to start, what exercises are best, and what pace to keep.

How to get your exercise routine started when you experience chronic illness

Remember to ask about the exact benefits of taking up some physical activity, the safe exercises you can do, the ideal intensity and duration of these exercises, and the realistic goals that you can set; as well as learning what exercises are definitely off your list that may cause you harm. You can find the right level of activity for yourself and your unique chronic condition only when you have the answers to all the above considerations to act as a basis for your exercise plan.

Dealing with exercise related fear, grief, and trauma

Exercising with chronic illness can lead to experiencing a turmoil of emotions, including fear, grief, and trauma. Fear can be brought on by worrying about being judged by strangers while exercising, or being scared that we may not be able to keep up or do what we used to. There is also the fear of onset numbness, flares, and possible injury.

Grief can be experienced while exercising with chronic illness because we may not be as fast as we used to be, and the loss of functionality and stamina during our workout routines can be upsetting. We need to acknowledge that our bodies will look and work differently than they did before the onset of our chronic illness symptoms. Even knowing this may not stop us from feeling vulnerable as we see other people doing everything we once could but now can’t. We need to be aware that each person has a different level of activity they are capable of.

People diagnosed with chronic illness experience moments of acute trauma. This can mean that due to pain they feel, they simply disconnect their mind from their body in an attempt to ease the tremendous pain they feel. However, when exercising it’s impossible to disconnect our body from our mind. The sensations that accompany being physically active are discomforting, especially for people with a chronic illness – as they tend to associate the pain from exercise with the pain associated with their illness.

Dealing with fear, grief, and trauma when exercising with chronic illness

These are some reasons many people with chronic illness avoid exercise. We can help ourselves overcome these by thinking encouraging thoughts and assuring ourselves that we are not in danger. The more we are able to deal with these emotions, the stronger and more capable we will become. This kind of practice will make us stronger – both physically and mentally.

Start off slow

It’s important to start off slow. Choose some light, mild activities as you begin your exercise plan. These activities could include taking a short walk, gentle stretching, riding a bike leisurely, or lifting light weights. If you’re a fan of walking, take some walks in nature: go to the park or the countryside. If you prefer cycling, find a perfect bike that fits your personality and needs and cycle leisurely around your neighborhood. Any kind of physical movement, even though it might not seem much to you, is better than no movement at all.

Choose activities you like

Usually, in life, we persist and continue doing what we enjoy doing. That’s why it’s key to choose the activities we enjoy because in that way we’ll have something that ties us to the activity. Another way to persist in doing physical activities is to find an exercise buddy. That helps you stay motivated and accountable. Everything we do with our friends is easier and more bearable, as we can give each other support during hard times.

Frequency is more important than duration

This means that you should focus on moving a little every day rather than doing something for two hours once a week. You should try to make the activities a part of your day. Even things such as using the stairs, sweeping and even standing up and sitting down on a chair repetitively are also considered to be light physical activities.

Set realistic goals

It’s necessary to be realistic in setting our goals. We should start with simple and easily doable ones such as some yard work and little housework, for those people who don’t suffer from severe chronic conditions. On the other hand, people who suffer from more severe forms of illnesses should maybe start with improving their flexibility in order to start managing some usual daily activities. Setting unrealistic goals can lead to disappointment and lack of motivation.

Don’t give up

Even if sometimes you can’t keep up with a regular activity once or twice in a certain period, don’t let that bother you. Take a break if you need to, but remember to go back to exercising as soon as you can. Go over in your mind what you’ve achieved so far and think about what you can achieve in the future if you keep up the good work.

Motivation is important

Everybody has a different motivation for making themselves go through something that is extremely difficult for them, such as exercise. Some people want to be in better physical shape in order to keep up with their toddler, while other people want to improve their mood, their quality of life, and their overall health – the reasons are countless. When you have a reason strong enough, you’ll find more time and energy to endure. It’s especially important to remember your motivation on the days you don’t feel like exercising. Motivation is a very powerful tool and it can help you achieve almost anything.

Remember: Your excercise plan can be adapted to suit you

If there is an exercise that you loved but are no longer able to do, it may be able to be adapted to suit your needs. This means you don’t need to stop doing what you enjoy. For example, yoga can be practiced from a chair and you can receive all the same benefits of improved flexibility, increased strength and reduced stress

You can adapt your exercise plan to suit you (chronic illness and exercise)

Try attending a class

Attending a fitness class has the benefit of being able to consult an instructor, who can help you do the exercises correctly and avoid any mistakes that could lead to an injury. If you worry that a “normal” fitness class may be too hard on you, you may be able to find a special class for people with disabilities or chronic illnesses. This means you also get to spend time with people who may have a similar condition as you, allowing you to share your experiences and maybe even hear a few good pieces of advice.

Learning how to live a to-some-extent-normal life when suffering from a chronic illness is not an easy task. With lots of effort, motivation, will, and support from our dear loved ones, we can try to improve as much as we can and be the best version of ourselves.

For more information regarding exercising with chronic illness, you can visit: www.gethealthystayhealthy.com

About the author:

Helen Bradford is a journalism student who always seeks new ideas to write about. She enjoys blogging about beauty, health and style trends for women. When she’s not writing, she spends her spare time being active through fitness and traveling.

September 30, 2019September 29, 2019

My Life in Words: (Ashley’s Spoonie Story)

Ashley's Spoonie Story: Ashley's Chronic Pain Journey

According to the Merriam-Webster dictionary, the word “chronic” is defined as: continuing or occurring again and again for a long time, always present or encountered. The word “pain” is simply defined as: mild to severe discomfort and suffering. If you combine the two definitions of the words “chronic” and “pain”, we reach a sole statement that describes the life of those whose “normal” has become something most people cannot comprehend: mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, and is always present and encountered.

Chronic Pain is Life Changing

As is the case with a lot of chronic pain warriors, my life didn’t start out this way. There was once a time when my life didn’t involve seeing my doctors more often than my friends; when pharmacy visits didn’t happen every other day; when I didn’t have to end up in the ER on a Wednesday night, curled tightly into the fetal position; when I didn’t spend my nights tossing and turning because of the insomnia; when I didn’t have to open a medication bottle multiple times a day.

There was a time when when I didn’t have to research for hours on end just to understand what happens beneath my own skin; when I didn’t have to sit and rest after a shower; when I didn’t have to try to explain things about my body to other people that even I don’t understand fully; and a time when I wasn’t intimately familiar with the definition of “chronic pain” as a result of life has become every minute of every day.

The Life Changing Consequences of Chronic Pain

Everything changed on of March 21st, 2011. It happened in the blink of an eye. It was a Monday, a bright and sunny afternoon, when an overthrown softball collided with the back of my skull as I was leaving our school’s softball field. I don’t remember much of that incident, except for three distinct things: my coach’s voice close by which was ricocheting around me like a bouncy ball; the cracking sound of the softball hitting my skull resounding in my ears like an echo in a cave; And lastly, the pain. The pain is what I remember the most, and rightly so, as it hasn’t stopped in 8 years, 5 months, and 25 days.

My Chronic Pain Journey

Throughout these years, months, and days, it has been a perplexing, debilitating, yet rewarding and valuable journey. There have been countless moments where I can’t even seem to even hold myself up anymore, falling to the floor and weeping for the soul that’s exhausted and depleted, and wondering if this is a life worth even living. I watched the doctor that I had trusted for 4 years look me in the eye and confidently tell me “I don’t believe you’re in that much pain.” I had turned to her to help me find answers to my never-ending questions and search for treatments that would help give me just a small glimpse of blissful relief, and this is what she said to me. She didn’t see the way I collapsed in the hallway; she didn’t hear my sobs outside of her pretentiously white-walled office; she didn’t see my family pick me up off the ground, all the while telling me repeatedly “we believe you.”

Living chronically ill isn’t for the weak, it has more hard moments that you would ever be able to imagine. However, there are also some moments that have made this journey that I’ve been living worth it in the end. For example, it has taught me how self-love is one of the most important things in life. One morning, as I stared into the full-length mirror that I attached to the back of my university dorm door, all I could see was a shadow of someone I once knew, someone I couldn’t even recognize. Staring at my reflection with my roommates laughing on the other side of the door, I said to my reflection, “I am going to love you one day, give me some time.” I realized that just because our bodies feel like a prison, that doesn’t mean we should treat them that way. And sometime later, before I even knew it, I stared at that same reflection and saw something else. I saw someone who adored their body, even if it malfunctioned.

The Importance of Maintaining Self Love on Your Chronic Pain Journey

Living life with chronic pain, a mild to severe discomfort and suffering that is continuing and occurring again and again for a long time, always present and encountered, might be hard for others to understand, but it’s an understood normal for us chronic pain warriors. We wake up every morning to endure another day, with a strength we didn’t know was possible. But it’s so important to love yourself, despite the reality your body puts you through. I loved myself as I walked across my university stage and received my college diploma; and I also loved myself as I sat in the ER in excruciating pain on a Tuesday night. Your body deserves the love you have to give, too.

September 7, 2019September 5, 2019

How You Can Decide Which Yoga Style Works Best For You: (Comprehensive List)

How to Decide Which Yoga Poses Work Best For You

Yoga is a disciplinary practice that helps us to reshape our unconscious patterns. It disciplines us by reducing the fluctuations of our mind and keeps our mind in harmony with our body. Practicing yoga helps us to build a framework to make conscious choices with clarity, mental peace, and happiness. This unparalleled form of wisdom is the ingredient we need to become spiritually aware and to enlighten our souls.

Yoga and it’s benefits

Practicing yoga mainly consists of Asanas (different body postures), and Meditation Pranayama (meditation while controlling your breathing), making it an efficient way to uplift our physical and mental health. Yoga asanas can improve our physiology by increasing our flexibility, strength, mobility, and balance. Yoga is a great tool to improve one’s physical stature and posture. The physical postures in Yoga allow our body to go through a full range of motion, reducing pain and tension in the muscles.

Modern Yoga has been divided into different forms, each with its own distinctive style and health benefits. It might be a difficult task to choose the one that resonates with us, but we can make an informed decision after evaluating all the styles available.

Styles of yoga:

Hatha Yoga:

This ancient style of Yoga is very common and focuses on asanas and pranayama. The asanas include twisting, reclining, standing and balancing of the body. This form of Yoga is highly practiced in Yoga teacher training in India.

What to expect: The Yoga asanas can be physically challenging and are usually slow and calm.

You should try this if: You need a grounded and pure form of Yoga with standing and sitting poses. It is also great for those who wish to develop awareness through pranayamas.

Benefits: Reduces muscular pain and de-stresses the body.

Making an informed decision about which form of yoga works for you

Viniyoga:

This is a branch of Hatha Yoga that focuses on breathing and meditation with poses. It helps in creating an inward flow of energy.

What to expect: Focus on breathing, meditation, and chanting.

You should try this if: You have limited mobility and wish to work from the inside out.

Benefits: Improved posture, body awareness, and relaxation.

Ashtanga Yoga:

This advanced form of Yoga has a series of poses that require quick transitions from one pose to another. This challenging form of Yoga is also regarded as ‘power yoga.’ Surya Namaskar is a popular form of Ashtanga Yoga with 12 asanas.

What to expect: Keen concentration on breathing while following a set of sequential poses.

You should try this if: You need a physically demanding session with fast-paced movements and acrobatic postures.

Benefits: Strengthened muscles, increased flexibility, and improved stamina.

Bikram Yoga:

This yoga form includes practicing basic asanas with breathing techniques for 90 minutes in a pre-heated room (40 degrees Celsius).

What to expect: Similar asanas as in Hatha Yoga.

You should try this if: You prefer a repetitive routine, extreme exertion and are okay with heat.

Benefits: Removal of toxins, as well as improved circulation of blood and oxygen.

Iyenger Yoga:

This form of Yoga works so that the body and mind can function in equilibrium. It has strict poses which focus on posture and proper alignment. The good breathwork helps you to hold poses for a longer time.

What to expect: Using Yoga props for standing and seated postures with good breathing techniques.

You should try this if: You want to work on correcting your posture and alignment.

Benefits: Increases range of motion, muscle tone and reduces anxiety.

Using yoga as an exercise when dealing with chronic illness

Vinyasa Yoga:

This is a dynamic and flowing form of yoga. It includes quick transitions with a rhythmic background. This is a cardiovascular exercise and is very popular in the US.

What to expect: Freeform and a dynamic exercise usually guided by an instructor.

You should try this if: You want an athletic kind of feeling with minimum restrictions in forms.

Benefits: Reduces body fat, increases flexibility and builds lean muscle.

Jivamukti Yoga:

This is a Vinyasa based style that includes chanting, meditation, and listening to the spiritual and ancient teachings of Yoga. This form of Yoga is good for the mind and helps widen our intellect.

What to expect: Sequences of meditation, deep listening, and chanting.

You should try this if: You want to experience the spiritual and ancient teachings of Yoga and its philosophies.

Benefits: Body awareness, widened mind and wisdom.

Kundalini Yoga:

This yoga form balances the energies of the body through mindful activities like meditation, chanting mantras, and pranayamas. It directs the flow of energy from the bottom of our spine to the seven chakras that revive the soul.

What to expect: Chanting mantra, deep meditation, and repeated movements.

You should try this if: You’re looking to deepen your spiritual practice.

Benefits: Deep spiritual awakening, corrects our energy channels, and you can feel the energy at the base of the spine.

Yin Yoga:

This is a slow-paced form of yoga where the positions are usually held for a longer period of time. The asanas are usually performed in a seated or lying position. The longer duration of each position releases tension in muscles by giving them a uniform level of stress.

What to expect: A slow style of yoga where poses are held from 1-5 minutes.

You should try this if: You deal with chronic muscular pain, stress or stiffness.

Benefits: Repairs connective tissues, releases tension and stress, and revives the range of motion of the muscles.

Using yoga for restorative and relaxing purposes when dealing with chronic illness

Restorative Yoga:

This form of Yoga is best suited for the purpose of resting and relaxation. This involves only five or six poses with minimum movement and passive stretching. Props are also used for better support and balance.

What to expect: Gentle and slow poses that are to be held for more than 10 minutes using props.

You should try this if: You’re suffering from chronic pain and stress.

Benefits: Stimulates the nervous system by aligning physical and mental aspects by practicing still movements.

Though all the yoga styles have different benefits to offer, Yoga has a consistent theme of synchronizing the body and mind so that people can reach their highest potential.

About The Author

Bipin Baloni is a passionate Yogi, Yoga Teacher and a Traveller in India. He organizes 200 hours of yoga teacher training in various cities in India and Nepal. He also conducts AyurvedaCourses in Kerala He loves writing and reading books related to yoga, health, nature, Himalayas and Trekking in Nepal .

July 13, 2019June 28, 2019

Comments That Are Hurtful to Recieve When You Live with Chronic Illness

I have lived with Chronic Pain and Chronic Fatigue for over 30 years now…I recently turned 57. My illnesses include Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a spinal condition called D.I.S.H., Gastroparesis, Atypical Trigeminal Neuralgia, Diabetes Type 2 and Bipolar Disorder. Most of my illnesses are invisible. To look at me, you would probably think I’m a healthy woman, but in reality, I’m suffering every day, all day. I use a cane for mobility and often a walker, and when the distance is too far, I use a wheelchair. Despite that, I have been on the receiving end of some hurtful comments and I’d like to address them here.

1. “You don’t look THAT disabled – are you sure you need that cane/walker/wheelchair?”

Yes, I’ve actually been asked that. Now, it’s important that you understand I’m a great advocate for myself, and I don’t put up with nonsense like that. My reply was “exactly HOW disabled do I need to be to use these mobility aids?”. They, of course, had no answer for that. Please don’t make comments about our abilities or lack of them. I do what I need to do to keep my body moving. I’m the best judge of my condition and what I’ll benefit from, not you. Unless you’re walking in my shoes, please don’t judge me.

2. “Oh, I’m tired too, I know exactly how you feel.”

Ah, Chronic Fatigue…how I hate you so. And unless you’ve been diagnosed with it, you have no idea what ‘tired’ really is. Chronic Fatigue leaves you so debilitated that you could sleep for 16 hours and still wake up exhausted. You have to rest after having a shower or bath because you’re shaking so badly from the exertion. Chronic Fatigue is like swimming in concrete, every movement takes enormous amounts of energy and the simplest tasks like brushing your hair or washing your hands take effort and concentration.

Being told "I'm tired too" when you experience chronic fatigue.

Don’t forget about things like working or raising kids when you have Chronic Fatigue…you feel like a lousy employee or an unfit parent when you suffer like this. Every task is a Herculean feat and there’s no way to win. Oh, and it’s every day and night too!

3. “Have you tried (fill in the blank)?”

I appreciate that people want to help, I really do. The thing is, I’m desperate to feel better, so I’ve tried everything that’s out there. Every drug, every therapy, every alternative option including CBD products, Essential Oils, Nutraceuticals… you name it, I’ve tried it.

When you make these suggestions to me, you make me feel like I’m not doing enough; and it diminishes the hard work that I HAVE been doing to get well. Again, I know people are trying to help, but just stop it. You’re not helping at all. If you really want to make a difference, ask your loved one or friend with a chronic Illness if there is any research you can do for them in regards to new treatments. That way, you’re not taking control of the person’s health, but you’re still offering to be helpful. And if we say ‘no thank you’, take that at face value and don’t surprise us later with a list of “things” that might help.

4. “Well, you don’t look that sick.”

This goes hand in hand with number one. First of all, how sick do I have to look to satisfy you? Do I need to have dark circles under my eyes, and have greasy hair? Wear sloppy clothes because I’m too ill to care for myself? I may be chronically ill, but I still take pride in my appearance, especially if I’m going to be in public. Sure, it takes effort, but to me, it’s worth it. Some makeup, a nice outfit…it doesn’t take much, but I want to look as good as I can because my illnesses already robs me of so much in my life. Why should I let them take away from my personal appearance as well? And no offense, but I’m not living my life to meet your standards anyway…I’m living life to meet MY standards, which haven’t changed from before I became ill.

Not looking sick when I apply makeup, as someone with chronic illness.

5. “When are you going to get better? You’re always in poor health.”

Hmmm, let’s define the word “chronic” for you. It means ongoing, persistent, without end. As in, my Chronic Illness is never going to go away. I may have periods of remission where my body is cooperating and things are better than they have been, but that doesn’t mean the illness has gone away…it just means it’s in remission. At any point, things can change and I could find myself bed-bound. Again.

When you ask a person a question like this, it only serves to depress us. We’d love to get better and live a normal life again, but this is a life sentence that we’ve been handed; and there’s no parole. Please don’t say this to someone living with Chronic Illness…tell us instead that you hope things will improve for us or that you’re not giving up hope for better days ahead. That’s what we hope for too.

Maintain hope for those you know with chronic illness.

I know that people often don’t mean to be rude or ignorant, but sometimes the questions seem to be asked without people thinking first. Please remember that we have been living our lives like this for probably a long time, and we’ve heard it all before. Think before you speak and put yourself in our shoes before you ask a question. Would you want to answer it? If the answer is no, then don’t ask. Just tell us you’re thinking of us and sending good thoughts. We appreciate that the most.

Pamela Jessen lives in Langford, BC Canada. She is a blogger who writes about Chronic Pain, Chronic Fatigue and Invisible Illness at pamelajessen.com She also writes for The Mighty, PainResource.com and various independent publications. Pamela is also a Patient Advocate with the Patient Voices Network in BC. She sits on 4 committees and one Provincial working group and has also been involved in advocacy work at the Canadian National level as well. Pamela is married to her amazing husband Ray and they have one cat named Dorie.

July 8, 2019June 24, 2019

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

Tips and Tricks for Studying With a Chronic Illness

Since I first started complaining of experiencing Fibromyalgia symptoms such as chronic pain at the age of 7, attending school has progressively become more and more difficult. Now, 12 years later, I experience constant widespread pain and fatigue. Despite the constant pain that is undoubtedly made worse by me attending university, I still love studying.

I’m the kind of person that enjoyed attending school as a child, and since I’ve been signed off work by my doctor, I feel like I’d be incomplete without study. Distance study could be an option for me since I become exhausted easily, however, I find that I don’t have the same motivation to complete work that I have when I attend classes at a campus.

Tips and Tricks for Studying At University/College While Experiencing Chronic Pain

I find that I have the mindset of if I travel into university, I may as well make the trip worth it by getting as much work done as possible. Plus, despite how boring they can be, I love the vibes of lectures and tutorials.

Please keep in mind that since I live and attend a university in New Zealand, some of these tips and tricks may not be applicable internationally. However, I hope that some of these tips and tricks are helpful to any students with chronic illness who may be reading this article.

Don’t Discount The Option Of Part-time Study

When I was first applying for university, I didn’t want to think about part-time study. I thought that because I (barely) managed full-time study through high school, I should be able to manage full time at university too. Basically, I was in denial. I thought that studying part-time would mean that I wasn’t coping as well as I should be and that I would be less of a student.

Luckily, I was turned down for the full-time program I had applied for, so instead, I had to do a part-time, four days a week program for a year to see if I would cope with the difficulty of the classes. While I did pass my classes during that year, the four-days-a-week schedule was very stressful and caused my health to go downhill.

Due to this, I had to dismiss the full-time program as an option for the next year, despite it being the only program that would give me the qualifications I need for my dream career. When I first had to come to terms with this it was a little heartbreaking. It felt like my dreams and aspirations were crumbling down around me. I now am studying part-time, three days a week in a completely different field. And while this is still difficult for me, I am far more comfortable attending university than I was before.

Contact Disability Services At Your Institution Of Study

When I first started applying to universities during my final year of high school, one of the first things I did was check out their Disability Services and the application process. I had been under the high school equivalent, which, I was told, considerably increased my chances of being accepted by the service. Being under similar services at high school gave me insight as to what to expect and what assistance I may be able to ask for.

The application process was pretty simple. I was given a form to fill out, which required not only a doctor’s input as to what assistance I required but also allowed me to write a paragraph myself about my chronic pain and how it affects my studies. I also attached some notes from my Chronic Pain Clinic Physiotherapist, who I had been seeing for the past two years at that stage, to add further context to my application.

Disability Services has helped me with many things. They have made sure I have a supportive chair in the classes that allow it, and exam considerations such as rest breaks (due to my back pain) and extra time (due to me having Complex Regional Pain Syndrome in the wrist I write with, and brain fog causing concentration issues). I definitely recommend checking to see if this is an option available to you at the institution you attend.

Don’t Be Too Self-conscious To Use A Walking Aid If You Need One

I have been using a walking cane since I was 16. Before that, I had been using crutches constantly to help cope with my hip, knee, ankle, and back pain. I switched to a walking cane because crutches became too harsh on my back and shoulders, causing too much pain to make using crutches worth it.

Being a young person who uses a walking cane, there are times when I can become very self-conscious, especially around other people my age. As you can imagine, this left me very anxious about the prospect of using my walking cane at university. However, I realised that I do need the walking cane to get through the day without collapsing from pain and exhaustion, so I decided that what other people thought of me didn’t matter.

Since my pain levels fluctuate, I love using a walking cane that folds up. This means that I can pack it away in my bag when my pain levels are lower, and then bring it back out when my pain levels are high.

Set Daily Or Weekly Study Goals Instead Of Schedules

Many students like to create an hour-by-hour schedule for completing their assessments and studying content from their lectures. However, when you’re in constant, fluctuating pain, this may not be manageable for you. For me personally, setting a schedule would be like setting myself up to fail, because my pain levels are never at a constant level (unless I’m having a really bad day and the pain is constantly high).

So, say I schedule an hour of study for 4:00pm. I may be feeling ok that morning, but by 4:00 I may be so tired and sore that I can’t concentrate. Instead, I like to set goals such as reading a chapter of a textbook a day leading up to an exam or aiming to complete a certain amount of an assignment within a certain amount of time.

During a particularly bad flare, I may not be able to achieve these goals, but when I’m not in extreme amounts of pain, these goals make studying while in pain achievable.

Keep Your Medication On You

I’m often guilty of forgetting to do this. While I take two large sets of pills first thing in the morning as well as at night, I also take pain medication during the day if required. I find it is far better to have my medication with me and not need it than it is to need my medication and not have any on me.

Since I travel two and a half hours each way to get to my university, the chances are high that I’ll need medication at some stage during the day. Being in too much pain can seriously affect my ability to pay attention in class and take notes, which in turn can put my grades at risk.

For this reason, it is imperative that I don’t forget to pack a sleeve of pain pills in my bag. I also love taking a small tube of Voltaren Emulgel with me to university. It is great for massaging acute aches and pains and works especially well on the swelling I get in my wrist.

Explore Your Campus And Find A Place You Can Rest In Between Classes

If you don’t live on campus and suffer from fatigue, this tip can be incredibly useful. My favourite space to rest at university is a room in the library that has couches and large bean bags. If a bean bag is available, I can put all my stuff down, lay back, and relax. This space also allows eating and drinking, so I can eat lunch and chill in this space.

Stay Hydrated

This tip may seem extremely obvious to people, however, I am often guilty of not drinking enough. I personally like to pack a water bottle that is at least one litre in my bag. While staying hydrated isn’t going to cure your symptoms, it does help with your overall feeling of wellness.

Use An Online Editor For Your Essays

This is honestly a life-saver when it comes to handing in essays. Often when a deadline is looming and I’m finishing off my assignment, my stress levels rise, and as a result, my pain and fatigue levels also do too. This can lead to me experiencing brain-fog as I write, which can result in anything from grammar mistakes to me writing utter nonsense without realising it.

Using a free online editor program such as Grammarly, I can detect any grammar, spelling, or punctuation errors and correct them.

Pace Yourself

It’s very easy to think you can push through your pain, but then you may end up pushing yourself too hard. It can be so incredibly tempting to “boom and bust”, this, however, can cause more harm than good, especially to your health. For the good of your health and grades, try not to take on too much work at once.

While attending University is definitely a struggle, I absolutely think it’s worth it. It gives me a sense of purpose that I may not have otherwise, and a chance to socialise and expand my knowledge. I hope these tips are useful to any students with chronic illness, and I wish you all the best with your studies.

About The Author

April 20, 2019May 15, 2019

What People with Chronic Illness Wish Our Friends and Family Understood

Finding My Confidence To Speak Up As A Child With Chronic Illness

Living with a chronic illness of any kind can truly impact all aspects of one’s life and make many things difficult. Poor health can put a strain on everything from your job and work life, as well as the relationships that you hold most dear. Over the years I’ve found that one of the hardest parts of living with a chronic condition is keeping your relationships healthy. While this may seem odd to those who haven’t walked this path, sadly, it’s very much an issue.

Until you are sick, you don’t see how much a strain can be put on your relationships by a chronic illness. When you have to routinely cancel plans or spend long periods at home in bed, it can be incredibly hard for those in your life to understand. This especially occurs when you have an ‘invisible’ condition such as Lupus or Multiple Sclerosis.

There are many things that those who deal with some kind of chronic illness (myself included) wish our able-bodied counterparts could understand. In this article, we are going to look at 5 things we wish our friends and family understood about living with a chronic illness.

I DO NOT like cancelling plans

Cancelling plans when you have chronic illness

Contrary to many people’s beliefs, most of the time we don’t like cancelling plans. Sure, there are times when we just don’t want to do something or go anywhere, but that can be the case for anyone, NOT just those who are chronically ill. Most of the time we would much rather be out and about doing things and being around people than be stuck at home. But sadly, sometimes that is not an option and we have to cancel plans. It is often easier to assume the worse than it is to find out what is really going on. People can often draw their own conclusions instead of asking why people with chronic illness are doing things like cancelling plans. I have found that in order to help those around us understand what it’s like to live with a chronic condition, we have to be willing and ready to be open about our health. We also have to be willing to work with those closest to us to help them understand what it’s like on our side of the table.

My health does not define me

My health does not define me – While our health may impact almost every aspect of our life, it is not all that we are. For instance, I am not just Amber who has Lupus. I am so much more than that. I do have lupus, but my illness is not what solely defines me. I am Amber with Lupus, who is a daughter, a sister, a friend, a patient advocate, and so much more. So please remember we are so much more than our health and should never be defined by it.

Just because I look okay, does not mean I feel okay!

It is easy to put on a brave face and to cover how badly I feel with makeup, for a short time. Outwardly I may look put together, but what you wouldn’t know is that it took hours to get ready because I had to take a break every few minutes. Living with an invisible illness is tricky, people can never tell I feel based on my outward appearance. So I wish people would please just ask, instead of assuming.

Please don’t compare my illness or symptoms to another person’s

Just like no two people are the same, no two cases of a chronic illness are the same. You may know three people who all have Lupus, but more likely than not they don’t have the same issues. Please don’t compare me to anyone else you know with my condition. You would never compare two Americans just because they are American, so please don’t compare the chronically ill. Also, if you know someone who died from my condition, I don’t need to know!!!

Just because I felt good yesterday does not mean I will feel good today

Many people who are not chronically ill do not understand that in order to get out of the house, we have to scrape together energy and will likely pay for it tomorrow. Please don’t assume that just because I was out for a girl’s day yesterday that I will feel like going to brunch today. Chances are that if I really pushed myself yesterday, I will be paying for it today and quite possibly for several days to come. Please don’t assume that I am being untruthful when I say I am in bed today, just because you saw me when I was out yesterday.

Many people have a hard time understanding chronic illnesses since the majority of conditions that are chronic are invisible, meaning they can’t be seen by the naked eye. That alone can cause issues in relationships because one cannot see what the other is dealing with on a daily basis. The pain or the shortness of breath can’t be seen and therefore often can’t be understood. This is why it is imperative that we, as the chronically ill, provide education to those around us. It is imperative that we explain to those closest to us what a good day for us is as well as a bad day. If we never explain why we are always cancelling plans, people may eventually start to assume it’s due to something they are doing, rather than the fact that we just don’t feel like going out. It is also important that we let others help us remember, as noted in number two above, that we are not defined by our illness. While we want others to remember this, we also need to remember this for ourselves.

In closing, we can’t expect others to understand the things discussed above if we don’t ever tell them. If we never share our health with those around us, we can never expect people to fully understand. It’s important to try to ensure happy relationships with friends, which requires communication and understanding.

About the Author

Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.

March 4, 2019June 21, 2019

What Doctors Say when They Don’t Know the Cause of Your Symptoms

Doctors don’t like to say ‘I don’t know.’ It appears to be a phrase they hate. There’s a lot they will do to avoid acknowledging that they aren’t sure as to what is happening – Doctors will often use lots of scientific jargon and short phrases that remove or dismiss responsibility from themselves. Let’s explore them, shall we?

What doctors say when they don't know the cause of your symptoms

They describe the condition

There are many diagnoses out there that give doctors an easy out when it comes to explaining a strange symptom. The most common ones, arguably, are ‘idiopathic’ and ‘essential’. If you are told you have an idiopathic or essential condition, be aware that the doctor has only told you what’s happening, not why or how!

The term idiopathic literally means ‘arising from an unknown cause’. My partner was diagnosed in July 2017 with idiopathic osteoporosis. Osteoporosis itself is much more a definition than an explanation, as osteoporosis translates into ‘porous bones’. For people who fit the standard expectations, idiopathic is sometimes all the closure you would get. For example, a woman in her 70’s who gets the osteoporosis diagnosis is going to be told she has idiopathic osteoporosis, presumably due to age. However, since Al is a man under 40, it was essential to dig deeper to define the cause, as the usual mechanisms were not in play.

Doctors don't know so they say "essential". This is another way to say 'idiopathic' or "we don't know"

‘Essential’ is another way doctors avoid needing to say ‘I don’t know’. The term essential is used in standard English to describe being either of the utmost importance (this is an essential piece of the dish) or of being purely that one thing (‘essential oils’). In medical terminology, though, ‘essential’ is a synonym for idiopathic – indicating that the issue is just the description with no cause attached. ‘Essential’ is often used to describe neurological symptoms that have no obvious connection to the conditions that might usually be associated with them. Essential tremors are an example. If your doctor uses idiopathic or essential in their diagnosis – or gives you a descriptive diagnosis (like osteoporosis), with no mention of why it’s happening, it’s time to press them to explain further or seek a second (or third) opinion.

Blaming the Patient

Sometimes when doctors have trouble finding the cause of the problem, they turn around and make it, on some level, the patient’s fault.

Doctors don't know so they say 'there must have been something that happened in the early child development.' This is the old 'blame the parents' theory.

‘Maybe he didn’t develop properly as a child’ is doctor language for ‘I see there is a problem, there’s irrefutable evidence of that. However, I can’t figure out the cause, so maybe he was born this way and we only just figured that out’. My partner and I were told this when we were investigating the cause of his osteoporosis. His broken hip and DEXA scans proved that he definitely had unusually brittle and weak bones, but this endocrinologist ran every test she could think of, and everything she thought to check didn’t explain anything. After we assured her that Al had not had weak/brittle bones as a child (he actually had been pretty accident prone, and at one point he broke a rock with his head!), or as a young adult (he was very involved in mixed martial arts, so had plenty of opportunities to reasonably break bones, but didn’t), we struck out in search of an endocrinologist who could think of more options.

Doctors don't know so they say 'it must be in your genes.' Even if it is, you have a right to know what is happening and what your treatment options are.

‘This may be a genetic variant’ – sometimes abnormal test results fit with a person’s genetic history. Al was told a couple times that his blood test indicated mild anemia, but at one point another doctor of his looked the information over and told him he likely has smaller hemoglobin than average because he is of distant Mediterranean descent. I’m not disagreeing with the statement, it may be true – Al is Hispanic so there is some Spanish in his ancestry. However, it did take the focus off his hemoglobin size and density when he actually had a form of anemia that required treatment.

Doctors don't know so they say "The patient is malingering.' this is the way doctors accuse a patient of exaggerating their symptoms, usually for the purpose of getting pain medications.

Malingering is the process of pretending to have a problem in search of some form of secondary gain. For example, a person with an opiate addiction may pretend to be in more pain than they are in to get an extra pill. For patients with many types of invisible illnesses, one of the ways doctors may dismiss our very real pain or other symptoms is to say that we are malingering in order to get attention or other gains. I was very fortunate that I was not accused of malingering, but many other people with conversion disorder/FND, fibromyalgia, and other conditions that don’t show on scans or tests are often accused of it. This results in these patients needing to ‘prove’ that they aren’t faking their illness.

Ways Doctors say ‘I give up’

‘Diagnosis of exclusion’ means that the doctor has run out of possible diagnoses. Doctors either recognize a condition when you walk in the room (‘oh that sounds like whooping cough’, or ‘I’d know that rash anywhere, you have shingles’), or they need to start coming up with hypotheses (guesses) that they can then test (usually against samples from you, or testing your response to stimuli). However, at some point, the doctor will run out of guesses. When the doctor runs out of guesses before you have a diagnosis, their last guess becomes their ‘diagnosis of exclusion’ – usually something that is difficult or impossible to confirm or deny with additional testing.

My condition, FND, used to be considered a diagnosis of exclusion by many neurologists – and honestly still is at times, even though there are now are relatively simple confirmatory tests out there – mostly related to consistency of symptoms and ability of the patient to be distracted from symptoms. Unfortunately, these are sometimes associated with malingering (pretending to be sick for secondary gain), and a lot of neurologists simply haven’t kept up with the research.

Doctors don't know so they say 'It's a coin toss.' Unless you're about to play football this is not an acceptable answer to the potential outcome of a patient. Ask for evidence based research findings.

‘It’s a coin toss’ is usually used in regards to treatment. Will this surgery help me, doctor? ‘It’s a coin toss’. This is more likely to occur when your condition has been happening for a long time. If a lot of treatments have already been undergone and haven’t helped, the doctor is more likely to suggest treatments that are higher risk or are likely to be less effective. By telling you his or her degree of uncertainty, the doctor is abdicating their medical responsibility to advise you, and allowing your desperation or pocketbook to determine your course of treatment. While this may at times be a correct answer, it still isn’t useful for you as the patient. If you get told this, I suggest seeking a second opinion or discussing the pros and cons further with your doctor.

Doctors don't know so they say 'Let me refer you.' At least with this one you get to see a more experienced doctor at some point.

‘Let me refer you to…’ is, in all honesty, the most hopeful forms of giving up. When a doctor suspects or knows that your condition is treated by a different type of specialist, they generally refer you to the specialist in order for you to be properly treated. Sometimes, the more hopeful times, they get information that adjusts their thoughts – for example, Al’s second endocrinologist referred him to a hematologist because his B12 was almost unmeasurable and so she suspected he had pernicious anemia. Her suspicions were correct, so we are grateful for the referral.

I was referred by a neurologist who specialized in epilepsy to a movement disorder specialist who was able to properly diagnose me. Again, that was a very positive effect – once the neurologist determined that I did not have epilepsy, a colleague of his was able to suggest a movement disorder as an alternative cause – and recommend an office to go to.
However, there are also times where doctors use referrals to get rid of challenging patients. By referring their patient to a different specialist, they are effectively passing the responsibility on and admitting that they cannot diagnose the issue.

Be aware of medical ‘I don’t know’s’

It can be extremely frustrating to see doctors only to learn that they cannot help you. Many doctors have found ways to avoid you realizing that they don’t have an answer until after you leave their office. As a patient, the more easily you recognize the ways the doctors avoid admitting their ignorance, the better able you are to either call BS and demand a better answer, or know when it’s time to find a different medical professional.

Again, be aware of terms that blame or put the responsibility on the patient, and condition descriptions that do not have any ‘meat’ or treatments attached. You deserve to have a full diagnosis, treatment options, and the ability to find people who share your diagnosis. Now that you know the terms, please keep your ears open to protect yourself from these non-answers!

Alison Hayes has a long history with disability and disabling conditions. She managed a mild learning disability in childhood, confusing her classmates by being in both advanced classes and the ‘resource room’. She was diagnosed with depression at the age of 9, and had her first unexplainable symptoms within a year or two of that. While in college, she started having strange movement symptoms, leading to an eventual diagnosis of conversion disorder in 2003.

Since then, she:

got on to SSDI,
got trained and certified in geographic information systems(GIS),
discovered new muscles by pulling, straining or spraining them,
taught college courses in GIS,
taught a lot of doctors about FND,
got a master’s degree in organizational change management,
regained the ability to safely use stairs, and
Started her own business. Twice.

She currently runs Thriving While Disabled, a blog to encourage others with disabilities to take back control of their lives, and is working on a community-building tool to enable the disabled community.

February 18, 2019February 21, 2019

Tips For Traveling with a Chronic Debilitating Illness

So, you want to get away from the stresses of everyday life, but one of those stresses happens to be your chronic, debilitating illness. What can you possibly do? Where do you want to go? How do you want to get there? How much time will you be taking? Who will be with you on this trip? What do you want to do while on this trip? How will your illness need to be accounted for during the trip? Excellent questions!! The easy answer is that there are tricks to make traveling easier, just as there are with any other activity. The key is understanding how your illness may affect you under any given circumstances.

Planning

First, let’s start with the planning phase. It is imperative to look at how climates and temperature changes will affect your illness. Can you plan your trip for a time when the weather is more stable and comfortable for you? For instance, do cold weather fronts affect your joints to the point where you cringe just at the thought moving? Winter may not be a very good travel season for you unless you are traveling south of the equator, where the seasons are reversed. Also, plan for rest time to try to prevent fatigue and those sore joints or muscles. Flights can be hectic if you plan an extremely short layover, so give yourself time for a quiet, easy movement between terminals. Many people like to jam pack every possible thing into their itinerary, trying to catch every site in the area they will be visiting. Don’t try this with a chronic, debilitating illness!! You WILL fail, and you may even land yourself in the hospital with a HUGE flare!

Do your research on the facilities where you plan to stay. What items are provided in the rooms? Do you really need to pack your hairdryer, if they provide one? Do they provide laundry service or laundry facilities? Another obvious point to mention here is to make sure that if you are not on the ground floor, the facility HAS a working elevator. Don’t accidentally book a 5-story walk-up and then find you can’t make it up the first flight! If you call the hotel directly, you will be able to talk to them and let them know what your physical limitations are, so that they might better accommodate you.

Space events evenly during your trip, not back to back, as with back to back events you will have to hustle from one event to another without proper rest, hydration, or medication. Leave yourself time to return to your quarters and get a good rest in, maybe a shower, or whatever you need to be able to continue. Some events offer multiple times during the day or week that they may be attended. Make a list of the events you want to attend, then prioritize that list, so that if you aren’t able to make the event you had planned on, you may be able to swap it out with another, less-desirable, event occurring later in your trip. Give yourself options. Don’t set anything in stone and don’t expect to be able to stick to the plan, no matter what.

Coping with Luggage

Luggage can be an issue during these trips. The best type of luggage for someone with a chronic, debilitating illness would be a decent-sized rolling suitcase, but not just any old rolling suitcase. First, choose a type that can sit on four wheels and can be nudged in any direction. The two-wheel sort with the extendable handle only travel in one direction easily and can be very hard on sore hands or shoulders and possibly the spine. One that rolls on its own is much easier. Also, opt for one large suitcase and one carry-on piece. With the type of suitcase described, the carry-on has a handy spot riding atop the larger suitcase.

Pack as lightly as possible. Do you really need to pack a fresh suit for every day you will be gone? In some cases, a small bottle of washing detergent and a few sheets of fabric softener may weigh less than the three or four extra suits you want to bring, AND they will take up less space. Think about what can be left out to lighten your load. Luggage can and will beat you up, if you allow it.

Traveling with Medication

Your medication can be problematic. Understand that if you use a pill planner box, you cannot take this with you without either the paper prescriptions or the prescription bottles. If the medication is separate from the proof that they are yours, then they are considered illegal. Also, plan to keep them with you in your carry-on. You may need some of them during the travel and they will do you no good if they are in the luggage that has been checked.

Don’t be afraid to ask for help

At the airport, when you check in, let them know your physical disabilities and request assistance getting around. There are skycabs, trams, wheelchairs, etc, available for people with various physical disabilities and illnesses. All you have to do is inform them of how you need to be accommodated.

This also goes for most of the events or sights you will want to visit. Be open and honest with the people at the various places you want to go to. Chances are, you are not the first disabled person wanting to visit, and they probably have plans in place for those eventualities.

Company

Another consideration is company. Some people like traveling by themselves, while others like to make trips a group affair. To each their own. However, consider if your illness will allow you to travel on your own. Do you need somebody to help you keep track of your meds, rest, activities, etc? Do you need someone to help you in and out of the shower? Is there someone who already fills this need in your life who can accompany you? Being hundreds or thousands of miles away from home with a chronic, debilitating illness can be frightening, unsettling, or downright dangerous. Play it safe.

If you don’t want someone traveling with you, then have things set up to deal with the trip. Set reminders on your cell phone, keep a copy of your medical information in your purse or wallet, including your diagnosis, current medication list, as well as name and contact information for both your “In Case of Emergency” contact and your regular treating physicia(s). There are even apps for your smartphone that allow you to keep this info available on your screen, but, alas, cell phones can die, or be stolen, lost, or broken. Best to have a hard copy somewhere within easy reach.

Last but not least; Breathe, Have Fun, and Enjoy Yourself!

You put a LOT of thought and preparation in to this trip. Take the time to truly soak in the atmosphere at your preferred destination. Keep track of what works and what doesn’t. Make notes for yourself for the next trip on how you want to make it easier.

Author Bio: Pamela is 48 years old and has suffered from Fibromyalgia for about 5 years. She lives in Louisiana with her three dogs. She has a vested interest in helping people in similar situations to her own, and she seeks to educate people about her illness and how best to deal with it.

August 3, 2018July 21, 2020

Rare Disease Spotlight Series: Thalassemia

WHAT IS THALASSEMIA?

Thalassemia is a genetic condition more prevalent in individuals of certain ancestries that can result in anemia. People with thalassemia have mutations in the cells that create hemoglobin. Hemoglobin is needed to store and carry oxygen in the red blood cells, leaving those with this condition fatigued. Mild thalassemia may be managed with life-style changes but severe forms may require blood transfusions or stem cell replacement therapy and can impact life expectancy.

thalessemia — Credit; **Transport Executive**

Types of Thalassemia

There are two types of thalassemia: alpha and beta. The type that a person has depends on which proteins in the hemoglobin DNA are affected by mutation. The severity of the disease and the symptoms a person experiences is determined by the type they have inherited.

Alpha Thalassemia

Two genes from each parent, for a total of four genes, are required to make the alpha globin protein chains. The chart below shows how missing any number of the genes leads to alpha thalassemia.

Missing Alpha Genes	Disorder	Anemia	Other Names
1	Silent Carrier	None	Alpha thalassemia – 2 trait, alpha thalassemia minima
2	Trait	Mild	Alpha thalassemia – 1 trait, alpha thalassemia minor
3	Hemoglobin H	Moderate	Hemoglobin H disease
4	Major	Fatal	Hydrops fetalis with Hemoglobin Barts

Beta Thalassemia

One gene from each parent is inherited to form the beta hemoglobin chain. The chart below shows how the affected genes cause various forms of beta thalassemia.

Affected Beta Genes	Disorder	Anemia	Other Names
1	Silent Carrier	Mild	Beta thalassemia minor
1	Trait	Mild	None
2	Intermedia	Moderate	None
2	Major	Severe	Cooley’s Anemia

Signs and Symptoms of Thalassemia

Individuals with thalassemia have symptoms that vary in severity depending on the type they have inherited. Some persons may be silent carriers with no symptoms but others may have mild symptoms that minimally impact their life. Still others may have symptoms severe enough to require life-saving interventional treatments.

Symptoms can include:

Chronic Fatigue
Weakness
Pale or yellowish skin
Facial bone deformities
Slow growth
Abdominal swelling
Dark urine
Anemia
Delayed puberty
Poor appetite
Enlarged liver, heart, and/or spleen

Diagnosing Thalassemia

Thalassemia is typically diagnosed within a child’s first two years of life by their pediatrician. As thalassemia is a genetic disorder, many parents will be aware of the risk and their health care providers will know the symptoms for which they need to be watchful. A complete blood count (CBC) will measure the hemoglobin and size and quantity of red blood cells. A type of test called a reticulocyte count can determine if the bone marrow is producing enough new red blood cells. Iron studies can determine if the cause of anemia is due to iron deficiency. Genetic testing may be used especially in cases of a family history of alpha thalassemia. Sometimes people choose genetic testing in family planning. Besides that, prenatal testing is possible when there is an identified family-history risk.

Treatment for Thalassemia

Treatment depends on the type and severity of the symptoms. Mild thalassemia may require no treatment or a patient may require a blood transfusion a few times during their lifetime. Moderate to severe thalassemia could require regular blood transfusions as often as every few weeks. This procedure can lead to the build up of iron, therefore patients would need to be treated with medications for iron overload. Some hospitals are now treating thalassemia with stem cell transplants. This procedure is capable of eliminating the need for transfusions in some patients. Most patients with thalassemia will be able to live full lives, but in severe cases life expectancy could be reduced.

Author T.J. Madden for The Unchargeables

About Author T.J. Madden

T.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday.