I wanted to share an article written by someone with Congenital Panhypopituitarism - the Disease I was born with. I can relate to much of what she writes about in the article, especially the unpredictability of this disease, flare-ups and feeling guilty when I have to cancel plans because of my health. So little is known about this rare disease.
ARTICLE: The Guilt of Feeling Well - by Sunny Amerman
The title of this article might seem absurd to most people, but those of us living with chronic illness won’t even do a double-take. Generally, people have good health that is consistent day-to-day, save for the occasional cold or flu, so this isn’t something most people even think to consider. It’s hard for most people to understand having energy some days, and feeling unwell on others for seemingly no reason at all.
Anyone living with the fatigue that accompanies many chronic illnesses can tell you that there is no such thing as “normal” for us. One day, we might wake up feeling like we can conquer the world, but we can not promise you that we’ll be able to get out of bed the next morning, or that we won’t have to cancel out plans for this evening thanks to a flare-up out of nowhere.
That’s where a lot of this “grief” comes from; those nights when we have to cancel plans due to a sudden wave unanticipated exhaustion.
Of course, the fatigue is only one of many symptoms of chronic illnesses, but I’m focusing on it for this article as I have the most experience dealing with it due to my Panhypopituitarism and the Secondary Adrenal Insufficiency and numerous hormonal deficiencies caused by it.
With Adrenal Insufficiency, the fatigue is brought on by complications with my adrenal glands, and it doesn’t take much to cause a flare-up. Even emotional stress has a real, physiological affect on my overall health that can be seen in lab tests. This is not a case of “mind over matter”, but a real physical symptom of a disorder that can be life-threatening. An imbalance in many of the hormones I am deficient in can cause debilitating bouts of fatigue, vertigo, and just general malaise as well.
Every diagnosis that fits the label of chronic illness has its unique complications and some are harder to cope with than others, but fatigue is consistently one of the more debilitating symptoms, which is why I am choosing to focus on that for now.
Before I go any further, I want to clarify what exactly fatigue is. This is not tiredness or feeling sleepy. The Mighty has an excellent video explaining it. Please watch this. It’s short, and to the point:
Because the fatigue is so overwhelming, we simply can’t “tough it out”. Doing so might put us in danger of passing out, or falling over and injuring ourselves, and that’s despite the fact that it just physically feels awful. Even forcing myself to sit up during a particularly bad bout of fatigue makes me feel nauseous and shaky. Sometimes if it’s just minor fatigue spell, a cup of coffee can help get me through it, but that’s rare. Usually, I have no choice but to lay down to rest, even if I had planned to do something I was really excited for. I can’t tell you the number of times I have had to cancel outings with friends and family because of the fatigue alone. I have tried to push through it a few times, and I always wind up feeling miserable, so I’ve learned to listen to by body and rest when it demands it.
Of course, that carries some social consequences. To people who don’t understand our illnesses, it may seem like we are blowing them off if they see us going out and having fun one day, and cancelling plans with them the next. It can look like we’re making excuses not to see them, when in reality we’re sitting at home feeling like crap physically, and beating ourselves up emotionally because we had to cancel.
While that by itself is difficult, I personally find it even harder to cope with the guilt I feel when I’m having a good day. I lost by job because of the fatigue and vertigo spells that overwhelm me at unpredictable times. Because I am unable to keep a job thanks to these complications, I decided to apply for disability. The process is long, stressful, and disheartening. I have been denied twice already. My attorney and I are appealing to see a judge now. With all of this going on, it’s hard for me to appreciate those rare “good energy” days when I have them.
Despite the fact that I know that the symptoms I feel are real and do require rest at times, I can’t help but feel like a hypocrite when I cancel plans one day and go out on the town the next, and when I DO go out and have fun on those good days, I can’t help but grapple with the thought that I could easily be at work somewhere in that moment. There are some days when I feel like I COULD be at work bringing in some pay to help with bills and groceries. Unfortunately, days like that are very few and far in-between. It isn’t uncommon for me to go a couple of weeks without having a “good energy” day. Most of the time, I am so weak I can barely keep up with household chores, let alone a part-time job. I know that if I were to go out and get a job, no employer would put up with having such an unreliable employee. Having a regular schedule just does not work when you can’t predict when you will be stuck in bed.
This is a boatload of emotion for me, personally, and I have a feeling many of you can relate to it. It’s so hard to enjoy myself when I’m feeling well, because I know it must look like I’m lying about my bad days.
This may seem odd, but I have grappled with the feeling that I shouldn’t go out and enjoy those good days. I feel like if I don’t stay at home and keep with the appearance of being ill, people won’t believe that I really am unwell. I don’t do that to myself, of course. I make the most of those days when I have them, but I still have that pang of guilt, especially when I can tell someone is judging me for doing so.
I don’t have a solution for this. As a matter of fact, I am currently seeing a therapist to help me cope with these thoughts and the depression brought on by them, as well as the depression from my hormonal imbalances courtesy of Panhypopititarism. I wish I had some advice to give those of you struggling with those thoughts as well, but as of right now, I’m at a loss just as much as you are. All I can say is, even though this is extremely rare and you are not likely to meet another person with this condition outside of the internet, you are not alone. I’m here, and I know how it feels. I’m always free to talk if you ever need to. You can reach me via any of the social media platforms listed under the “social media” menu at the top of this page.
If you are on Facebook, check out this support group for Congenital Panhypopituitarism patients. If you do not have CPHP, but you struggle with other chronic illnesses, there are a plethora of amazing support groups on Facebook for you as well! My favorite out of all of them so far has been “MBMBaM Spoonies“, a group specifically for those of us with chronic illness who also happen to be fans of “My Brother, My Brother, and Me“.
Even though I struggle with this guilt and shame, I always try to remember that this was not my fault. This was not my choice. These symptoms are real, and what I feel is real. My experiences are real, and my frustration is valid. Anyone who chooses not to believe this is ignorant, and I should really pity them for being unable to show compassion for someone enduring something that would likely break them.
I am physically weak as hell, but I am strongerthan they will ever be.
I just need to keep remembering that, and I hope you will as well.
Featured image courtesy of Pexels.com
Please read the article and view Sunny’s video on CPHP basics - an informative video on the disease
