When I Feel Like I Need a 'Good Reason' for My Symptoms

Being pinned down by extreme fatigue or intractable pain, I always find myself wondering about its origins. “Is it the rheumatoid arthritis (RA)? Could it be shingles again?” I think, “Maybe I ate some gluten by accident…” Since many people with chronic illness, especially autoimmune disorders, seem to have more than one, a lot of us play this guessing game. “Is this my multiple sclerosis (MS) flaring up, or just the flu?” “Did I eat something bad, or is it Crohn’s disease?” It may not seem that important to the general public; feeling awful is feeling awful. But sometimes, action is required. If someone with MS is experiencing an exacerbation, they probably need to be on IV steroids to reduce the risk of further damage. Or a recurrence of symptoms could herald a new phase of disease that needs to be addressed.

Almost all chronic illnesses list fatigue as one of their symptoms, so we’re always wondering if we’re truly tired, or is it the disease rearing its ugly head again? Often, it’s both. (Especially if you have babies or toddlers in the house.) Brain fog is another common symptom. (I’m enjoying it right now, trying to come up with another word for “symptom.”) It often piggybacks with fatigue, or can be caused by fatigue.

Perhaps we’re just looking for the right terminology. It’s easier to answer “Why weren’t you at work last week?” with a breezy “It’s the MS again,” rather than trying to explain symptoms and side effects, disease processes and co-morbidity. And really, very few people want to hear about another’s digestive complaints. Trust me on this.

I find myself often defending my horizontal position, lest my loved ones think I’m lazy. No one ever actually accuses me (not to my face, anyway!); maybe I just have a guilty conscience. Many people with chronic illness do not want to be in bed. We want to be out in the world with our families and friends, working or playing or grocery shopping. But our bodies don’t want that. Our damaged bodies force us to lay down, or at least rest. I’m not putting my feet up because I live a life of leisure; my feet are up because my legs are screaming in pain. A person dealing with MS or RA is not laying down because he has nothing else to do; he is saving his energy for when he really needs it, like at work or on a long drive. But it’s a shame that we feel like we must have a good reason for resting.

Those of us with chronic illness need to stop feeling guilty or pushing ourselves. This is something I have to tell myself every day, even though I’ve been living with chronic illness for 25 years. When we’re tired or hurting, we need to just rest and not worry about what anyone else thinks. If hiring someone to do housework is within your means and allows you to have energy to spend on your kids, then you should take advantage of that. We need to take care of ourselves and our families, first and foremost. Terminology be damned!