Chronic Illness tests even the strongest relationships; causing some to fail. This letter is to all those who have been through breakups. May you find your source of light.
Hi, its me, your chronically ill ex. I’m writing this letter to tell you all the things I never got to say.
First, I want to thank you for being with me through the rough moments my health caused. With you by my side, the hospital stays, surgeries and emergency room visits were a little less terrifying. I want to thank you for holding me on the days where I couldn’t get out of bed. Thank you for making me smile whenever all I wanted to do was cry.
I often wondered if I was cursed with all that’s wrong with me, but you were the constant reminder that there were still good things in life.
I realize it isn’t easy loving someone who needed so much help, but you never made me feel like any less of a person. You always made me feel as if I still mattered. My illness was something we both battled. You were my partner, my ally, my best friend.
As my body changed, you never made me feel any less beautiful. You promised me the disease could never make me any less beautiful, because the beauty you saw came from my soul.You never complained about staying home with me instead of traveling the world and visiting theme parks like our friends did. Our paradise was our time together. I didn’t have to travel to exotic places, because my whole world was beside me.
Even though we are not together now, I want to thank you for being a light in the darkness. I always attributed your presence to what saved me from utter darkness and despair.
I saw you as the source of light in my life.
And then I realized something! When there is much deep, pitch- black, darkness any speck of light seems brighter. My illness was so devastating it created so much darkness in my life, of course you seemed to be the brightest light in the universe.
But you didn’t save me. You didn’t shield me from the darkness. I did. I saved me. I kept my own internal light burning. I held onto the light within my soul,
When you left, I felt like the only light in my life had gone out. But I quickly saw that I had always been holding onto my own light all along. My spirit inside me was what kept me alive all these years, not you. As much as it hurts to see you truly abandon me, it made me realize that I never really needed you at all. The light I thought you were came from me the whole time.
So, I wish you well, former love. Thank you for helping me realize the power within myself.
You’ve probably heard about the health benefits of yoga in improving mental and physical health, and in improving flexibility. Due to the shared benefits, the words ‘yoga’ and ‘meditation’ are often thought of as synonyms. Although meditation can be incorporated into yoga, they are different practices. While I was skeptical of meditation at first, it has indeed helped me to manage my stress and life while living with Multiple Sclerosis, chronic pain, and fatigue.
How Meditation Works
Meditation involves clearing your mind while maintaining a state of awareness. Or at least trying to! It is much more than sitting and concentrating in a quiet area for a designated amount of time; it involves calming your mind of all thoughts, achieving a deep inward peace, and maintaining attention and alertness in the process.
Have I gotten to the complete deep inward peace thing? Nope, not yet. But I have found that meditation is an excellent way to relax, to calm my anxious mind, and to take the focus off of my pain.
People often use certain postures, breathing techniques, and even chants to help facilitate the process of meditating, but these are not required. They are not the act of meditation itself, just the support tools. Personally, I like to meditate in my favorite recliner or in my bed because it’s most comfortable for me.
Stress as a Spoonie is Extra Hard On Your Body
Meditation makes the body less responsive to stress hormones, which lowers blood pressure, improves blood circulation, improves digestion and immunity, and establishes emotional and neurological “balance.”
How does this work exactly?
According to what I’ve learned, it mostly comes down to hormones. Stress hormones such as cortisol and adrenalin increase blood pressure and heart rate, while “feel good” chemicals, such as serotonin, (which are released in a state of relaxation), work to repair cells.
Tips on Getting Started with Meditation
As a beginner, taking a meditation class, watching a video, or using an app that introduces you to the concept of meditation is the easiest way to get started. A guided meditation teaches you various techniques for facilitating the process. It is not as easy as I thought it would be, but I’m glad to have another calming tool in my toolbox.
You may be able to find a class in your community that is specifically dedicated to meditation, but for me, it’s been easier to learn through online tools. Some meditation videos/audios can be found for free online. Try searching YouTube, or downloading an app. If you prefer a mix of yoga and meditation, the best types of yoga to focus on include Kundalini, Ananda, Jivamukti, and Integral.
Research shows that just 20 minutes of consistent meditation sessions can have tremendous health benefits. When my therapist suggested I try it, I was skeptical. There was no way I could do it for twenty full minutes! So I started with just five minutes at a time. Meditating before you go to bed can help you to fall asleep too. Personally, falling asleep is a struggle, and I have noticed that I fall asleep much faster if I meditate in bed.
Try getting outside! Many people find that sitting in nature – I just sit on my back porch – helps them to facilitate the process of meditation. It’s also a great way to get outside and absorb some Vitamin D.
Of course, everyone is different. To get started, experiment with different ways of meditating to see what work for you and what helps you the most. Also, try meditating at different times of the day and for different periods of time to find what works. It’s okay if you cannot calm your mind completely, (I rarely can!), you can still get many benefits from making the effort. Remember, you and your health are worth that effort!
Jenna Green is the creator Full of Grit & Grace, a blog and community for people who cannot work a traditional 9-5 job. She’s an outspoken spoonie with Multiple Sclerosis, Dystonia, Degenerative Disc disease, chronic pain, and a whole lot of grit. She strives to help others (and herself) to learn to give themselves grace while going through tough times. She’s a dog mom, auntie extradonaire, fashion lover, and (mostly) optimist.
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?
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.
‘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.
‘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.
‘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.
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.
‘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.
‘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.
One of the biggest challenges we face as “Unchargeables” is pain. Whether it’s from disease or injury- pain is an unfortunate part of our daily lives. We have our good days and we have our bad days but pain is still reality for us.
My pain comes from my Medullary Sponge Kidney, where I make daily kidney stones, have kidney/bladder spasms and frequent infections. I also have all over muscle pain due to the lack of cortisol from Addison’s disease. This pain is what I classify as senseless pain. There is no healing going on, no purpose in it. It is just pain. It has no function other than the result of something that is wrong.
Recently I have discovered there is another form of pain. This pain is not senseless. This pain is for a reason.
Since starting physical therapy, I feel like I have been hit by a bus. But for the first time in months, I’m moving my body and out of bed! My pain has increased, but I feel like this pain has a purpose. I hurt but I am getting stronger, building my muscle mass back and will be able to walk again! Every painful exercise, stretch and movement will be worth it in the end.
That being said, the senseless pain will still be there whether I can walk again or not. Some days will still be rough.
My mind continues the dance between hope and despair over this reality.
The only thing I can do is create purpose within the senseless pain.
Unfair is not a strong enough word to describe chronic illness. I can remember my students whining to me saying “But that’s not fair!” To which I would look at them and reply, “Fair is where you get cotton candy, that is the only place fair exists in life.”
Daily pain is not fair.
Chronic Illness is not fair.
Life, my friends is not fair.
Purpose is not found, it is created.
So I am choosing to create a purpose within the senseless pain.
Out of suffering comes compassion,
out of compassion comes love
and love can change the world!
I want to live in the focus of love and not my pain.