Living with an Invisible Illness, Part 1

Living with an invisible illness is a topic I’ve been avoiding for quite some time. I really don’t want to be that whiny person who’s always complaining, so I sometimes gloss over the downside of dealing with all this craziness. But as I talk with other people who are going through similar issues, it becomes more and more evident that communication is very important between those experiencing chronic illness and those who know them and play support roles in their lives. There’s a social aspect of chronic illness that isn’t often discussed, but I’m going to break my silence on the matter. So please, bear with me. Here goes…

There’s a special term used to describe a disease like Crohn’s. Besides technically falling under the umbrella of autoimmune disease, Crohn’s is also considered an “invisible illness,” a reality that a surprising number of people are dealing with right at this moment. This means that although one of us may look fine on the outside, we could actually be suffering with a longterm, if not incurable, condition on the inside. (Note: this idea can also be applied to those dealing with an “invisible disability,” such as someone suffering from chronic pain.) Because our symptoms are not visible, others may have no idea what challenges we are truly facing. Even if we are not showing any obvious symptoms, we are still dealing with diseases that require management every day, and they are often conditions that can leave us debilitated at any given time. Other examples of invisible illnesses include a wide variety of autoimmune disorders such as lupus, ulcerative colitis, celiac, multiple sclerosis, fibromyalgia and chronic fatigue syndrome, as well as many, many more. There are also many non-autoimmune invisible illnesses such as cancer and heart disease. In the case of autoimmune disorders, it’s not uncommon for symptoms to overlap and for some people to develop more than one autoimmune condition. Such as in my case: although my official diagnosis is Crohn’s, the devastating side effects of certain medications have left me with symptoms of fibromyalgia and chronic fatigue as well (sigh).

I’m not bringing any of this up because I’m seeking pity (in fact, I really dislike feeling pitied) but instead, to bring awareness as to why some of us battling invisible illness may have to lead our lives a little differently from the rest of the world. Often times, we are faced with having to decline invitations to the simplest of activities, as most of us know there are limits on what — or how many — activities we are able to handle at any given time. For me, this means learning how to pace myself and plan a schedule that’s not going to push me back into a flare and land me in the hospital. Additionally, symptoms (anything from fatigue to pain to nausea, or other non-dinner-conversation-symptoms) can change from minute to minute, so I might be feeling okay one moment, but awful the next. Side effects from medications might also kick in at the most inopportune times (side note: I pray you never have to experience longterm prednisone use; if you do, hold on to your hats and glasses…it’s going to be a bumpy ride.). In addition, if I’m on immunosuppressant therapy, it means I have to consider what germs I might be exposed to before I can decide whether or not I can participate in any particular social activity (a compromised immune system means we don’t have the ability to fight off infections the way a healthy person would). And then there’s the psychological complications — anxiety, depression, feelings of hopelessness — that are pretty much guaranteed to come along with chronic illness at one time or another. (Enough whining for you yet?)

In a perfect world, I wouldn’t have to share any of this personal information (actually, in a perfect world, I wouldn’t be sick in the first place, but I digress…). I would deal with it on my own, and no one else would need to be bothered with details of how I’m feeling. The problem is that when I have to decline an invitation and the inviter asks me, “Why?” it’s only fair to give an honest answer, and this is where it gets sticky. For example, I know that in order to pace myself, I should only plan for one major activity in any given day, but it may be difficult for that someone to understand why. That person may not understand why a previously-made morning commitment might prevent me from committing to another event later that day. And why would they? The average person doesn’t face such challenges, so how do I explain how one activity could leave me completely wiped out and exhausted? (And by wiped out and exhausted, I mean feeling like I’ve been hit by a bus and drained of every last ounce of energy). How do I effectively communicate this without sounding like I’m complaining or imposing an extra long answer on that person inquiring?

It’s not easy. It’s often assumed that if I’m doing “better” overall (meaning I’m not currently in a full-blown flare or lying in the hospital, or I’m able to drive or walk around without the accompaniment of excruciating pain…you know, seemingly regular-people-stuff), that I should be able to slip right back into “normal” life and do all the things I used to do before I was sick. It’s hard to explain that although I’ve come a long way and I’m far better than I was, say, two years ago, I still have an ongoing disease that I have to manage on a daily basis. A “good day” for me doesn’t mean I am symptom-free and feeling fantastic; it simply means that although I might feel a little crappy today, I’ve got this under control and I’m going to smile through it anyway. That is, if I stick to my routine. If I veer from that routine, it might set me back quite a bit. But again, how do I explain that? There’s a fine line between complaining about our conditions and providing information so that our loved ones can understand our personal decisions. It’s always a struggle to choose my own well-being, knowing that in the process, I’m possibly letting someone down.

So in an effort to speak not only on my behalf, but on behalf of others who also live with invisible illness, here is an open letter to anyone who might be wondering why exactly some of us have to do the things we do (and it is written with love):