Being diagnosed with a terminal or chronic illness can be disorienting and disappointing. But as you accept it with time, you will learn to cope with your illness by making changes in your lifestyle. Stress affects everybody, and suffering from long term health conditions may make you vulnerable to the struggles stress can bring. You may appear to be absolutely fine on the outside, but inside, you might be torn apart by the stresses of being constantly dependent on someone for doctor appointments or having to clean up, go outside, run errands, etc. To persevere the spirit to live must be there. No matter what you are suffering from, being aware of the conditions and taking precautions can ease the everyday struggle. The more positively you can handle the struggle, the easier it will be to take care of the challenges.
My 7 ways to cope with a chronic condition:
Often a lot of turmoil lies in mind. Accepting being terminally ill or having to suffer from a lifelong condition such as diabetes or thyroid issuestakes time for acceptance. Once you’ve accepted it, it puts your mind at ease and allows you to look for ways to combat the disease while living your life. Take your time but accept your current situation as that is only when the mind will start to look for a solution.
Look for support:
We all need people that support us when we go through a tough time, and when experiencing illness, having a strong support system is half of the journey. Having your friends and family with you during these times can boost up your confidence. Do not worry about the toxic relationships in your life and only focus on people who add positivity to your life. Value the people who love and care about you and make them a part of your inner circle. Social media is also a great place to get support from those experiencing similar conditions to you.
Gain more information about your condition:
When you are suffering from a chronic condition, it is always safer to have a thorough understanding of the disease and its conditions. If you have doubts and questions, don’t hesitate to ask your doctor. You may also research online or look for support groups to gain more knowledge about the condition. Keep track of the symptoms your body exhibits and get to know your body better. Analyze methods that may help to manage symptoms related to your condition and share details with your healthcare provider.
Manage symptoms of depression:
People suffering from chronic illness go through a wide range of emotions. You may feel weary, drained out, and be in a dark place due to the condition and the symptoms you experience. A lot of people miss out on their regular doctor’s appointments and skip medications, which ends up in further aggravating the condition. It is important to be well informed about the symptoms of depression and how to tackle them. Speak to a therapist if necessary.
Take your medications on schedule:
It is often hard to remember to take medication, it’s even harder to remember if you have to take 10 of them. Set a reminder or an alarm on your phone to remind you to take your medicines on time. Remember the names of the medicines you are taking and get a deeper insight into the drugs you are recommended. Speak to your doctor to learn more about each drug and its side effects, why you’re taking them, if you may discontinue them in the future, etc.
Live in the present:
Suffering from a lifelong disease can make you worry and fear the future, but the best way to live one’s life is to focus on the present. Always follow the rule of ‘Be Here And Now.’ Focus on what you’re doing; if you are eating, be conscious of what you’re eating, what color food you are eating, etc. It keeps the mind focused on the present activity and prevents it from wandering off in unprecedented directions.
Find something you love to do:
Practicing a hobby is therapy in itself. Whether it’s painting, gardening, or reading a book, find out what you like and do it. Hobbies can bring joy, a feeling of productivity, and a distraction from the suffering of real life.
Coping with a chronic illness can be difficult, but there are methods that can make this easier. Live in the moment and take baby steps every day. Changes don’t happen overnight, but as long as you make progress, you’re doing great.
About the Author:
Henna is a wellness lifestyle writer. She loves sharing her thoughts and personal experiences related to natural remedies, Ayurvedic, yoga and fitness through her writing. She currently writes for How To Cure. She can connect with others experiencing health concerns and help them through their recovery journeys through natural remedies.
Thinking about things like upcoming holiday gatherings with large crowds of people can bring on anxiety for people who don’t even usually have anxiety issues. Face it, the holidays are stressful. When you have bowel troubles, being in crowds, coupled with food to which you simply cannot say no, and a sketchy or unknown bathroom situation can make the already “standard level anxiety” explode into a world of unknown possibilities that would make Willy Wonka’s world of pure imagination seem dull. I spend the holidays with Crohn’s disease and anxiety together, and it always makes me wonder if I am on Santa’s naughty list. I seriously wish I would just get a lump of coal instead.
Christmas Before Chrohn’s Disease
When I was a little girl, we always spent the holidays at my grandparents’ house. It was a huge, old, three-story home, complete with a creepy basement. There were lots of wooden pillars between each room and a beautiful wood and marble tiled hearth, with a mirror around the fireplace. The stairway was located down the hallway between the family and living rooms. The stairway “secret passageway”, as I remember calling it, mysteriously somehow led into the kitchen, the basement, and the upstairs area where the bedrooms were, all behind the same magical door.
The bathroom was upstairs, also. The one bathroom. The one bathroom in the whole great big house. The one bathroom that all of us, and there were over fifty people, had to use when we gathered for the holidays at Grandma and Grandpa’s house. There was even a little couch on the landing area just up the stairs that sat outside the bathroom, because you were inevitably going to have to wait for it to be your turn. As a child, this didn’t bother me at all. I used the time to explore the upstairs bedrooms and look around at all of the things I wasn’t allowed to touch. I was particularly interested in my Grandpa’s ship in a bottle – I still don’t know how that thing got in there!!
Christmas with Crohn’s Disease
Now, if I had to go to a one bathroom house for any kind of get together, I would panic. There is no way I would be able to negotiate any kind of celebration with that many people and only one bathroom. Even if there is a super comfy couch to sit on and wait my turn. Because of Crohn’s disease, I can’t wait. When I have to go, I have to go immediately. And the thought of just being somewhere that I don’t have immediate access to restroom facilities creates a level of anxiety that freezes me in my tracks and keeps me from doing so many of the things I want to do. Even if the people are family and understand my situation, it doesn’t make the anxiety stop – not even a little bit. It does make me wish I just got a lump of coal instead, though.
Holidays & Social Anxiety
The feelings of “what if this,” or “what if that,” happens regarding my bowel issues are one thing – and a horrifying thing at that. But then there is the social anxiety that I have to contend with on top of bathroom anxiety. I don’t like large crowds. I don’t like loud noises, especially sudden or startling noises. I don’t like to hear small children or babies crying uncontrollably. It is very difficult for me to make small talk, even if it is with people I know and genuinely enjoy being around. It’s actually terrifying for me. And I cannot explain what it is, or why it is, in any way that makes sense to someone who has never felt this way. It’s just emotionally and physically painful. I always try to fend off these feelings with humor and sarcasm, laughing so I don’t appear so uncomfortable. But deep down, I’m in very real agony. I’ll take that lump of coal now instead, please.
A lot of people say they get it. I often hear, “I understand, I don’t like crowds either,” “I don’t like loud noises,” or “The screaming kids get on my nerves too.” No, that’s not exactly it, but I appreciate the sentiment – sort of. Other times I’m met with a downright denial of my feelings altogether, “It’s just one day, you can get through it.” I honestly wish it were that easy.
Anxiety around the holidays for me is two-fold because not only do I fight with the anxiety of being around a lot of people, I am also fighting the fears about the bathroom situation at any given time. It’s been years since we all gathered in the one bathroom home of my Grandparents. My family gets together now in places with multiple bathrooms, which helps ease that problem just a little, but bathroom anxiety never truly goes away when you have bowel problems.
There is always that kid that pounds on the bathroom door even though they just saw you go in there. There is always that super overly concerned, but well-meaning relative that asks you if you are okay all three times they see you come out of the bathroom. There is the other relative who automatically knows how you feel and tries to empathize with you because they have a lactose issue or a spastic colon. So they have to make a huge deal about how alike the two of you are – usually loudly and in front of everyone – doling out the same ridiculous advice they give you every year that is sure to “cure” all your problems. And then there is the jokester, who tries to make fun of you going to the bathroom again and again. Even though they are trying to be funny to make you feel less self-conscious, they always end up making you feel worse. But hey, it’s only one day. It takes several weeks to mentally prepare and four days to recover from that one day, but, it’s only one day. Lump. Of. Coal. Please
Not Just One Day
For me, and so many like me with anxiety, it isn’t just one day. It isn’t just one hour. It isn’t just sucking it up and doing something you don’t want to do like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day. It’s the fret and worrying and concern and overthinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day. It’s also knowing you will never be fully prepared enough, so you start freaking out about that. Then it’s the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that you worried about it. Except, even knowing that doesn’t ever stop the pre-worry. It doesn’t end there, though.
It’s also all the days after the events suffering from extreme exhaustion and the need to come down from the high levels of stress and anxiety and all the interactions with other people. The physical fatigue and genuine body pain from having to endure such a distressing ordeal, coupled with the havoc that it all wreaked in my gut, puts me out for days afterward – even if it is just having dinner with my family at Christmas. It’s all of those days and it’s exhausting. I feel that anyone who has to deal with chronic illness in any form, on top of the normal holiday stress, deserves superhero status and a sweet cape.
It’s not about not wanting to be around my family. I desperately want to be around them because I rarely see them. I desperately want to spend time laughing and eating and having a good time enjoying the holidays, or any other celebration, without a care or second thought about anything – just like I did at my grandparents’ house when I was little. But now, anxiety happens. I can do my best to control it, I can take my medication, I can do my self-care, and I can be funny and pretend I’m okay. But the bottom line is the anxiety is still there. The irrational fear is still there. The “what if’s” are still there. I get that, technically, it is just one day – except it isn’t. I do understand what is happening. I even have insight into how illogical it is. That doesn’t make it stop, though. I wish it were as simple as being able to tell myself that it’s just one day and I’ll get through it. Seriously, where is that lump of coal instead?
This, my friends, is what makes people with chronic illnesses so very special. We really are superheroes. Everyday superheroes endure these kinds of situations, mostly silently, and we do it well. We’ve done it for years and we will continue to do it because that’s what superheroes do. That, and we don’t really have a choice. So let’s go don our invisible capes and get through our holidays and remember, that when it’s all over, we don’t have to do it again for a whole entire year! Now, isn’t that more fun than just getting a lump of coal? Eh, I’m still not sure. Happy Holidays!
About The Author
Jenni Lock is the creator of Jenni’s Guts blog and writes about her journey with intestinal nonsense and other chronic health issues. Her sense of humor, sarcasm, and willingness to talk about the things most people just think are all part of her charm. Learn more about Jenni and her guts at JennisGuts.blogspot.com.
I’ve always found it difficult to share my feelings
with other people. I would keep it all to myself. This, however, changed when
we received the latest diagnosis for both my daughters.
Let me start by giving you some background information about me and my family: It’s just me and my girls, and we live in Holland. We are also known as the bendy bunch, all three of us have Ehlers Danlos syndrome. And as a bonus, we all have some similar and some different additional illnesses (which we like to refer to as extra toppings). Mine are adenomyosis, dilated aorta, retinal vein occlusions, high blood pressure, and I no longer have my own teeth. Both my daughters have POTS, ME and as we know now since June this year Craniocervical Instability (CCI), Atlantoaxial instability (AAI), hindbrain herniation, and the youngest is close to brainstem compression. When they were giving out chronical illnesses, we were obviously front in line… And I’m pretty sure I forgot to write some of them down.
The shock of these new diagnoses
The latest diagnoses were a shock. We’ve been dealing with chronic illnesses for quite a while now, but this one really gave me a scare. Not one, but both my girls have a life-threatening and life-limiting disease. And as I usually do when I get stressed, I started planning and thinking about what could be done to fix this. I turned to the insurance company, but the treatment, an operation done in another country, wasn’t covered. This didn’t come as a big surprise, because we had to go to another country for the diagnosis which, as you can probably guess, was also not covered.
As I continued to process this, my thoughts
went in all different directions as my emotions went into a spin. You wouldn’t
have known that, though. On the outside I was calm and rational, and I tried to
stay that way. I had to be strong for my daughters. They needed to know that
everything would be okay, or at least, as normal as possible. When we received the
news about these diagnoses, the adrenaline took over and I went into first,
second and third gear. I’m still feeling it after two months because if I let
go of this adrenaline, I’m afraid I’ll break down. And that’s not an
Creating a Foundation and Establishing a Social Media Presence
In the last two moths following the diagnoses I started a foundation called Help Jane & Rosa battle CCI/AAI. We had to go to a notary office to make it official. As a result of the Dutch tax laws, I found that a foundation is the best way to go. Otherwise, all donations would be considered an income. Friends of mine built the website, and I deliver all of the text and images. We have also created a Facebook page, an Instagram account, a Twitter account and a YouTube channel. Unfortunately, most of the videos on our YouTube channel are in Dutch, however we try to make some English versions too.
Filming these videos was really awkward
for me. In the beginning of this article I mentioned that I’m not a great
sharer, but as you can see, I’ve stepped outside all of those boundaries I once
had. Writing about what’s going on in our lives is one thing, however filming
videos was a huge step for me. If you want a grin you should check it out. Even
with me speaking in Dutch you can see how exposed and awkward I feel. Luckily
my daughters, especially Jane, are taking care of the video aspect. This meant
I could start writing a blog for our website. All this work establishing a
social media presence is to raise more awareness and to fight for an operation
for both of my girls.
The Support of Friends, Family, and Aquiantances
I always knew I had great friends and
family (not all of my family has been supportive, but who has a perfect
family?) but what really surprised me is how supportive even my colleagues have
been. Not only have they supported me by making a donation, they have also done
so much more. One started designing T-shirts, one started developing calendars,
and Jane’s old school of is thinking about a project for raising funds. They
offer help in any way they can. I know not everyone is so lucky, and for me, receiving
all this support was a true eye opener.
I realised that not only was I bad at sharing, I was also reluctant to ask for help. I surprised a lot of people by reaching out for help, and as the time goes by, it gets easier to do so. I still blush when I do, especially when I do it face to face. But I’m managing it and it makes me proud that I do. Today during a coffee break at work, I asked the owner of the coffee bar if he could share our fundraising page and make a donation. And again, the warmth of people was overwhelming.
On the workdays I’ve been drinking my morning coffee there for over the last five years, my daughters’ illnesses have come up in some conversation. He was very concerned for their health and immediately started thinking about things he could do to help. This shows that even acquaintances are sometimes more than just people you meet now and then. The bond you have with them is sometimes stronger than you think.
All Of This Helps Me To Stay Strong
Blogging and writing about how I feel what’s going on, and where we stand is really helping me cope. Sometimes it puts things into perspective or helps me to channel my emotions in a constructive way. Today I felt sad while I was going to work. I was quiet during a meeting because my thoughts were all over the place and I felt like I could burst into tears at any moment. So, I started writing this article, thinking about all that has happened in the past two months and all that I’ve achieved. And for a chronically ill mum, with chronically ill daughters, I feel like that’s a lot.
So, I’ll keep you posted about how all
of these illnesses have an effect on us and our lives, about how the
fundraising is going and what difficulties comes with raising funds, and how
all of this mixes with work and day to day life. Sometimes it’ll be sad,
sometimes it’ll be fun and sometimes it’s just how it is. Because every day is
different and life don’t always turns out as planned. And that’s okay, as long
as we have each other we’ll get wherever we want to go, eventually. The love in
our family will always get us through the rough spots and that’s how I stay
Monique Blaauw is a mother of two daughters (20 and 19). Founder, chair(wo)man and treasurer of the Help Jane & Rosa battle CCI/AAI foundation. She has been a single mother for 18 and a half years. Works fulltime, as well as being the caregiver for both her chronically ill daughters and older mother and is chronically ill herself.
The topic I’d like to share with The Unchargeables community is another one that hits close to home for me: Cluster Headaches. Almost 8 years ago, my sister Stephanie, now 30 years old, was diagnosed with chronic migraines, as well as chronic cluster headaches.
For those who are not aware, clusters fall into two categories. Episodic Cluster Headache attacks occur in cycles lasting seven days to one year separated by pain-free periods lasting one month or longer. Chronic Cluster Headache attacks occur for more than one year without remission or with remissions lasting less than one month. You can check out the site Cluster Busters for further information.
A Life Turned Upside Down
From the time my sister was 11 years old, she has had several different types of headaches. But this condition has turned her entire life upside down. While there has been some success with medications and oxygen therapy, it turned out not as successful for her. From the time she was little, she has been immune to pain medications; even simple antibiotics take longer to work on her. For the last several years since her diagnosis, Steph has really struggled to get answers. And of course, because cluster headaches are an invisible illness, it is harder for her to be taken seriously about how much pain she truly is in.
You can imagine my frustration being her big sister. I am supposed to able to protect her. And I can’t protect her from this. Instead, I am watching as an invisible monster attacks my sister six times a day relentlessly and without mercy. And people to say things to her like, “Maybe you should see someone.” Or, “Well, you look fine.” What the medical field and the general public don’t seem to understand is that not everything can be easily diagnosed with a simple textbook or basic chart.
We Don’t Know Enough About Cluster Headaches
What has truly shocked me since Stephanie was diagnosed is how many times we have heard, “We just don’t know enough about cluster headaches to know the true cause of them.” I am sorry, but when you’re in the medical field, don’t you often hear how doctors, scientists, and researchers love to discover the next big breakthrough? Why can’t the next big breakthrough be one on cluster headaches? While there have been some great studies done and trials on new medical procedures and medications, there needs to be more of an effort from the medical field and yes, even the media, to take this neurological disorder more seriously.
“The Most Painful Condition Known to Man”
There is a reason this condition is dubbed “the most painful condition known to man.” Individuals with this condition go to great lengths to relieve the agony they’re going through. It is for this reason that I find it highly insulting when someone simply dismisses this condition as “just a headache.” Don’t you think if it were as simple as taking a couple of Motrin, my sister would gladly do it? I also strongly believe that because invisible conditions are not necessarily known to be quick fixes among those in the medical field, it is easier to play the stress card than to find the answer.
I also feel that the word “headache” should be removed indefinitely from the description of the condition. It may seem insignificant to do so. But I believe if we do that, it could get a wider spotlight put upon cluster headaches, thus, bringing it to the attention of the medical field and the general public. This could then lead to the start of a very long-awaited conversation on this neurological disease that has affected far too many people.
Just because this condition is considered invisible does not mean it is not real. I guarantee you, it is a very real condition to those who have cluster headaches and their loved ones.
About the Author Jessica Niziolek:
Blogger, disability activist, writer, poet, and podcast host.
A year after my father’s diagnosis of prostate cancer, my family and I have learned that the saying, “one day at a time” is more than a simple saying, but a way of life when you’re dealing with such a sneaky illness like cancer. My family and I aren’t strangers to overcoming obstacles but when we got the news about my dad having cancer my mom, sister, and myself all wondered how did we get here? Is this really happening? And what do we do now?
“…when we got the news about my dad having cancer my mom, sister, and myself all wondered how did we get here? Is this really happening? And what do we do now?”
Once the initial shock wore off, we had a game plan. We eventually started taking each day as they came. And soon we realized that all things considered we were very fortunate. To have had (and to still have) the outpour of love and support from friends and family means so much. We realize now that family doesn’t necessarily have to mean you share the same blood, but you can share family in spirit and in the heart.
While cancer will always be something we contend with, it’s comforting to know we won’t be doing it alone. I have noticed my dad has changed some since his diagnosis; he is more reflective and reminisces a lot. Music also has played a big part in our journey. When my dad first started chemo, my sister started a chemo countdown where he wore his favorite metal and rock band t-shirts to his chemo appointments, then talking to the artists via Instagram and Twitter. Does music heal? Maybe not from the scientific standpoint. But it does help, not only the person going through it, but it can also help soothe and forget your issues for just a little while.
“I have noticed my dad has changed some since his diagnosis; he is more reflective and reminisces a lot.”
I also believe a positive attitude is everything. If you believe you can, you will. It’s important to remember too, that putting on a brave face also means being real about your dealing with. If you’re pissed, be pissed. If you want to scream or cry then do just that. I have done all of the above.
When you’re faced with something as scary as cancer, it can teach you very quickly what is important. I also know that we could have it much worse than we do. I know for me that what I used to think of as a big deal isn’t. And that I do my best now not to take for granted any and all chances that I am given to tell those how much they mean to me, and how much I truly love them.
“…it feels like we’re walking on this surreal tightrope. Where are we balancing between keeping a normal routine? We’re holding our breath once more with the next doctor appointment.”
For my family and me, it feels like we’re walking on this surreal tightrope. Where are we balancing between keeping a normal routine? We’re holding our breath once more with the next doctor appointment. It’s in these moments where I turn to music once again. And one song I leaned toward to the most during the beginning of this was a song by one of my favorite bands called, Jonathan Jackson + Enation. The title of the song is “Anthem For The Apocalypse.” “Would you look me in the eye? You have nothing to fear the storm will clear. I will hold you in the night.” It just so happens that on the day that this album came out on, July 14th, 2016, that was the day my dad had his first chemo session.
I took that as a sign that everything would be okay. This journey will always be one my family and I will always be on. Cancer will always be a close advisory for us. I see cancer now as the unwanted guest we can’t get rid of. But if that’s the price my family and I have to pay to still have my dad then, we can learn to live with cancer.
I guess that’s the in-between of living with cancer. Having to deal with it, manage it in a way where it’s not the main focus in your life, but you still know it’s there. It will always be there for us; for my dad.
In other words stay on top of treating it, but making sure it doesn’t topple you in the process.
“I see cancer now as the unwanted guest we can’t get rid of. But if that’s the price my family and I have to pay to still have my dad then, we can learn to live with cancer.”
While cancer does bring a lot of uncertainty with it, there is one thing I am certain of and that is cancer has chosen one tough family to mess with. And we will never surrender to it. We are ready to fight with everything we have in the years to come. Cancer has nothing on us. Adversity and fighting against unbelievable odds are what my family and I do best.
We don’t like it, but we learn to live with cancer in the best way possible. And we do what we need to deal with it at that moment. And believe me, there are plenty of moments. We learn to lean our strength as a family and remember that tough moments in the journey of cancer are part of the deal. If cancer has taught me anything is that when you find yourself in the middle of a pile of crap, you push through it. Because that is only part of the journey and not the entire journey.
Jessica is the founder/writer of the blog, “The Abler.” She is also the host of her own podcast, “The Many Faces Of The Abled.” She is a passionate disability activist. You can find her blog at https://seetheabled.blogspot.com.