5 Things I Wish People Understood About My Chronic Illnesses

There are a few things in my life that I wish others could understand. Here are five of them…

1. Wheelchairs come in multiple sizes for a reason and are used for mobility.

Anyone could end up in a wheelchair at any given point in life. If I had a nickel for every time someone asked me what I was doing in a wheelchair, I might be able to afford a better wheelchair. It seems everyone feels the need to stop a young-looking person and ask that question. They ask the question in a way that makes me feel like they think wheelchairs are for the elderly or that I don’t need it. First of all, I know children and babies who are not able to walk and have to have mobility aids, so people need to accept that wheelchairs, walkers, crutches, canes, etc. come in multiple sizes so they can be used by people of all ages and sizes. Second, wheelchairs are not comfortable and I would not be sitting in it if I didn’t need it. As for what I’m doing in a wheelchair…if you have to ask the question, expect a smart aleck remark. I’ve been told there is no such thing as a bad question, but if you have to ask what I’m doing in a wheelchair, I’m going to tell you the obvious: “Moving from one place to another.” Or, if I’m in a really good mood, I might say something like, “I’m flying to Mars…can’t you tell?” If you don’t want my smart aleck answer, don’t ask the question.

2. I’m not “lucky” because I can’t walk.

Being in a wheelchair does not make me “lucky.” I’ve been told on several occasions by able-bodied people that I’m lucky to be in a wheelchair because I don’t have to walk everywhere. What they don’t seem to understand is that I was an active, energetic teenager when complex regional pain syndrome (CRPS) took over my leg. I enjoyed volleyball, softball, hiking and dancing. Oh, how I’d love to go for a hike or a run or play with my nieces and nephews. While a walk around the park might not make my legs and feet tired and sore, it definitely takes its toll on my shoulders and arms. It’s also a struggle to keep sores from forming through pressure on the bottom of my hip bones.

Now don’t misunderstand me, I’m not complaining. I may not see being in a wheelchair as a sign of luck, but my wheelchair is a blessing. My wheelchair makes it possible for me to go to the grocery store, doctor appointments and church. While I can’t partake in many of the activities able-bodied people enjoy, I celebrate the fact that mobility aides make it possible for me to leave my bed, move about the house and occasionally visit a family member or friend.

3. I did not choose CRPS or gastroparesis.

People can’t control whether or not they get a chronic illness and not everyone can be cured. I don’t know where this idea comes from, but many people make comments that make it seem as though my chronic illnesses are something I’ve chosen or caused and I should be able to easily fix them by changing my diet, exercise routine, etc. Let me assure you, I did not choose the pain and other side effects of CRPS and I did not choose the vomiting, nausea and pain of gastroparesis. Even the doctors are not sure why I have either of these chronic illnesses.

It’s not that I don’t have enough faith or that I’m making unhealthy choices. It’s just something that happened. For those who think I need to have more faith, I wish they could be me for a day. My faith is just as strong as it ever was, but I’m willing to accept that God might have bigger and better plans for my life with CRPS and gastroparesis. Many people look at chronic illnesses negatively, but I’m willing to face the challenges life throws my way and make the most of the hand I’m dealt. Sure, I could easily crawl into a dark hole of despair and hopelessness, but I can also accept my body the way it is and enjoy life to the best of my ability. It may not be the life I chose, but I get to choose how I live it. I have days when I get down, but I can’t let myself stay in that dark place. I must choose to be happy.

4. I’m not eating because I don’t like vomiting in public restrooms.

Vomiting in public restrooms is disgusting. It never fails that when I get up the nerve and feel well enough to venture out to an event, people notice how much weight I’ve lost and start pushing food my way like they think I’m starving and need to feed myself better. I explain that I can’t eat a lot of foods because I have gastroparesis and I will vomit if I eat too much or the wrong kinds of food. It’s not that vomiting in front of people bothers me, it’s that the thought of vomiting in a public commode grosses me out. I know people who squat because they are afraid to sit on public commodes. For those of us with gastroparesis, if we need a commode, it’s not our bottom that’s sitting on it. I don’t touch the commode when I vomit, but imagine sticking your face close enough to a commode that hundreds of people have used to vomit, and vomiting so hard that it splashes back in your face.

Those self-flushing commodes make it even more of a challenge. If you’ve ever used one that’s extra sensitive, you know what I’m talking about. If you are sitting on a self-flushing commode that is extra sensitive, it flushes almost nonstop and sprays water on you. If you’re vomiting and it is flushing, that water hits your face instead of your bottom, throwing vomit and germs back at your face and hair. Personally, I find that too disgusting. I’d rather eat in the comfort of my own home, where if I get sick I have my own private commode to vomit in. In the event that I’m going to be away from home and need to eat, I carry small trash bags (sold in both the pet and baby sections at Walmart). I can vomit in them and throw them in the trash. Seems much more sanitary to me than sticking my face where everyone else’s backside has been.

5. I appreciate your kindness, but please stop telling me, “You look good.”

Looking good and being healthy are not one and the same. I appreciate all the kindness I’m being shown. I know I’ve lost a lot of weight and am no longer obese. I really appreciate all the comments about how I’ve lost so much weight, how I look so good and how my color is good, but I wish people would try harder to understand what I’m going through. I get tired of being told how good I look and being asked what I’m doing to lose weight.

I’ve finally learned to be honest. At this point in life,  I have little control over my weight. I eat multiple small meals a day, but my stomach often rejects them. I’ve lost the weight because gastroparesis has starved it off of me. When I tell people, “I’m basically starving,” I get this look that says, “You couldn’t really be that sick,” and then I hear one of my favorite phrases: “Well, your color is good. You don’t look sick.” I must admit… sometimes it makes me feel like screaming. Being complimented for being sick seems a little odd to me. Mom says people make her feel like she’s lying about how sick I really am because I don’t “look sick” to others.

There were a couple of weeks before my PICC line was put in that no one saw me. Well, one of my aunts did stop by to visit and saw what I looked like. When I answered the door, she looked like she had just seen a ghost. I wasn’t just sick. I was very sick. I knew something was happening to me, but didn’t know what to do about it. My body was turning gray and my skin could be formed like play-dough or clay. It would hold the shape I formed it into. My aunt later told me that I did not look good that day when she stopped by. She had been very concerned. My color may be “good” now, but it’s because I’m getting IV fluids through my picc line daily at home with dextrose and potassium added to it. It’s hard to get people to understand that my IV fluids are what make me look “healthy” or like I have “good color” to them. Even with the fluids, there are days when I’m very pale and weak. When I don’t feel good I don’t go anywhere. If you see me at church or the grocery store it’s because I’m having a better day.

As I’ve heard many others with chronic invisible illnesses say, I’m not looking for pity. I’m just asking people to be more understanding. Yes, I am aware that my chronic illnesses are invisible. It’s very hard to convince people that it’s real and not just in my head. Most of the symptoms associated with CRPS and gastroparesis are invisible. Others cannot see pain or nausea. Unless you see my leg on a day that it’s swollen or purple and cold or are nearby when I vomit, which is sometimes as many as 20 times a day, you may not even realize I’m sick just by looking at me. If you have a family member or friend living with a chronic illness, I encourage you to learn what you can about their illness. Learning a little will show them you care enough to want to understand them and their condition better. We aren’t looking for pity, we just need people to try to understand, to encourage us and to show us they care.

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Thinkstock photo via UrchenkoJulia.