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):
Dear Loved One,
Please know that I appreciate every invitation you send my way (and I hope you keep sending them!). You better believe that I will do my best to be a part of whatever it is. I want to see you, spend time with you and live happily amongst the rest of the normal world. But sometimes I may not be able to join you in the capacity you would prefer. Please don’t take it personally if I’m unable to attend or participate the same way everyone else is.
Please don’t be offended if my mood seems off; I might be dealing with a surge of nausea that just hit me out of nowhere, a sudden increase in my pain level or a wave of exhaustion that’s just taken the wind out of me. Like the old breakup cliché says, “It’s not you, it’s me.” Really, it is.
Please understand that I may have to limit the activities I can schedule in the same day or even within the same week. Depending on the situation, it might take me a day or two to recuperate from the activity I participated in yesterday. Yes, it’s true…as crazy as it sounds! My body gets wiped out easily sometimes, and I’ve learned that I have to listen to it or I will face the consequences that not only will make life miserable for me, but terribly inconvenient for all the people around who have to step in to take care of me when I get sick. You see, anything that triggers my illness doesn’t just affect me; it affects everyone around me too, and the last thing I want to be is a burden if I don’t have to. So if I can take care of myself, in turn, it makes things easier for everyone else.
Please know that when you ask me how I’m doing and I reply, “fine” or “good,” there is probably much more to that answer, but I don’t want to bother you with it. If I do go into detail, please know that I’m not trying to fish for pity or whine about my problems; I’m simply explaining so you might understand why I was late today or why I have to leave early or why I don’t have as much energy as the next person.
Please know that it’s not the just the activity that poses an issue; it’s all the other stuff I have to do to prepare. Because of my special diet, I have to think about whether or not I need to eat before I leave my home or whether or not I need to pack something to eat and take it with me. It might mean prepping my medications and supplements so I have them handy when I’m away from home. And when I’m feeling lousy, preparing all of these things before I leave can take a while and be exhausting in itself. Sometimes I have to make time to rest before I go somewhere, so that I don’t run out of steam too early that day. Essentially, everything requires preparation; so please don’t be offended if it falls on a day when I’m not feeling well enough to handle it all, or if it takes me a little longer to get there.
I know a lot of this may sound bizarre to you, especially if you are healthy and haven’t faced any limitations with your health. It may seem overdramatic or perhaps, even like an excuse. I assure you, it’s not.
Most of all, please know that I love and appreciate you for playing a strong support role in my life. I thank you for understanding, being patient and most importantly, for not giving up on me. Because I’m not giving up on me either. I want you to know that I hope it won’t be this challenging forever. I’m working on making it better — if even slightly — every day.
Your Sick Chick
If you are living with an invisible illness, please comment and share about how your experience has affected your life and how you’ve coped with it. Additionally, if you know someone who is struggling with playing a support role in the life of a loved one with an invisible illness (or any illness for that matter), please share this article with them. It might help open up a much-needed dialogue.
For more information about the challenges of living with chronic illness, be sure check out Living with an Invisible Illness, Part 2!