A lot of people ask me why I waited over two years to go to the doctor to get checked out for some serious medical problems I have been having. I usually answer that it was due to my extreme fear of doctors, which is true. But more than that, it was because I knew my life would change forever once I was diagnosed.
I’m still in the throes of being diagnosed, but from what we know right now it appears that I have two chronic illnesses, one of which is an autoimmune disease. I will never be perfectly healthy again. For the most part, I have been surprisingly positive throughout the process but I also allow myself to mourn the inevitable changes.
I mourn that every aspect of my life will now be touched by these diseases. Things as simple as going to Servo are no longer things that can be spontaneous, but require careful consideration and planning. At one point, I was even hit with the realization that due to my severe dietary limitations, I might not be able to eat cake at my own wedding. And a wedding requires dating which is stressful enough, add on the fact that I experience chronic fatigue, an inability to eat most food, and unpredictable flares, and dating seems to be an even more daunting task! But it’s okay to be upset about these things, it is okay to acknowledge that it really sucks and that it’s not fair. It’s hard to feel like you’re not alone, but I’m here to tell you that there are others who mourning similar losses of health as you. That isn’t meant to invalidate your feelings, you have every right to be upset, but it might be a place of solace and comfort.
It’s one thing to mourn the future, but there’s also the component of looking back and seeing all the areas that the illnesses affected your life without you being aware of it at the time. No, you weren’t just being a flaky teenager, you were experiencing actual brain fog, a symptom of your chronic illness. And no, you weren’t being dramatic and wimpy when you had to cancel your plans with friends, your body was truly shutting down. Anxiety was intensified because of your illness, sleep habits affected, and stress continued to mount on top of all the normal life things that are oh-so-stressful.
I mourn all of the strain being put on relationships already, when it’s only been a few weeks since I have been seeing doctors. I’m glad that my friends know people with the same illnesses as me, but repeatedly being told that they live perfect lives with no complications doesn’t help me, the doctors already know my combination of issues are going to be very challenging to treat. Friends, albeit well-intentioned, tell me that it’s no big deal, “It’s not like its cancer!” I mourn the distance I have put between me and those close to me who have managed to say all of the worst things they could, simultaneously invalidating and brushing off everything I have to come to terms with. I’ve heard it gets better, easier to explain how they can help you, but it is still one more change to add to the list.
Image via Finding Out Fibro
While I advocate for positivity, I also encourage acceptance of negative feelings. Chronic illnesses and autoimmune diseases change your life, not just for a few weeks or months, but until the day you die; chronic illness = chronic losses and grief. There’s nothing wrong with being upset, angry, sorrowful, and mournful. Try to remember that you are not alone, even if you feel like it on your darkest days.