I Now Get the Frustration that comes with having an Invisible Illness
In many ways I was fortunate to have been so obviously ill. The sudden change in my physical appearance from healthy and active to being in a wheelchair with uncontrollable muscle spasms was drastic and scary. There was no denying that something was very wrong. Because of the obvious signs of illness I never dealt with the issues many lyme suffers have to deal with. We will ignore the fact that I only got so bad because of my stubborn refusal to accept I was sick. In reality, most people apparently have the common sense to demand answers to their health problems way earlier in their symptom progression.
I have read many accounts and heard many complaints of lyme patients who were frustrated when people said to them, "you look so good!", or "you look so much better". I honestly couldn't understand why lyme patients couldn't just take those comments and accept the good intentions behind them. The people saying these things were only trying to be encouraging, why were lyme patients being so negative about it?
It wasn't until this summer, now that I am eight months into treatment, that I began to understand. First, if you have said this to me, no worries! I am happy to be out and I am happy I don't look sick anymore. Still, I do now understand the frustration lyme patients feel when hearing these comments. The most common comment I hear is, "you are looking so good, it's so nice to see you out!". I always responded by saying I was happy to be seen! After months of being stuck at home it was so nice to not only go out, but to have the energy to do my hair and makeup first and then once out be able to have conversations with people. So even then these comments didn't bother me and I still couldn't understand why other lyme sufferers were so bothered by them.
Now, a few months later, I completely get it. I am at a new point in my journey to recovery. It is no longer an endless stretch of bad days where the occasional good day was a day where I could do a load of laundry and read a few chapters in a book. I have days that are so good I can go for a short walk, help with more rigorous housework, do some bookkeeping, or even teach a taekwondo class with the help of my trainee instructors. I don't do all those things in one day, but on my good days I usually can have an hour or two of activity, rest a few hours, and then have another stretch where I can get more done. Right now I seem to have a couple of good days followed by a couple of bad days. This also doesn't account for the days that are REALLY bad, the really bad days are the days I'm taking medicine that causes me to herx. Putting it all together, I still have many more bad days then good days.
So, when I am out and about on a good day, and hear people say how it's so nice to see me looking like I am feeling better, I wonder if they realized how sick I still am. It's true, I am feeling better! I am happy that overall my body is working more normally. I no longer use a wheelchair or my handicap parking tag. I can talk to others without my arms having a mind of their own, flaring around as I speak. I can pretty consistently walk without the weird neurological gait I use to have. I can even do short shopping trips without using the store scooter! So yes, I'm feeling better.
It's also true that my bad days are really difficult to get through. The fatigue is overwhelming, making getting out of bed almost impossible. The pain is unrelenting so even if I do get out of bed I can't do much. The vertigo makes me feel like my house is a boat and I often have to take Dramamine to just be able to walk around. The optic pain makes reading and watching tv impossible so I am not only stuck in bed, but I am bored out of my mind. I usually am able to have brief moments where I connect to the world through my phone, beyond that, I feel pretty invisible on my bad days.
The problem lyme sufferers have is that nobody sees us on our bad days. We only leave the house on the days our bodies are functioning and our pain is tolerable. When we hear how much better we look it is easy to feel invalidated. I didn't feel this way at first, but now that I have been able to leave the house more consistently I have a hard time not feeling this way.
As a lyme patient I am already facing many obstacles. The general medical community denies the existences of my disease resulting in even many of my peers denying my disease as well. There are few local doctors who treat lyme, and none that I have found who treat chronic lyme as aggressively as it needs to be treated. So along with being sick, I have to travel out of state to get good medical help. Insurance doesn't cover much of our treatment protocol or the lyme doctors who treat us which causes financial stress. To add insult to injury, I am to sick to work leaving me dependent on others. Oh, and don't forget this isn't just me, my husband and two of my children are also going through this at the same time. So I am trying to be a good wife and mother and do what little I can to help them as they deal with their own illness and treatment. All of these problems are the problems of every lyme patient. To make matters worse, we are in treatment for not months, but for years. I know I would be tired of hearing someone go on about their health for years, so I don't really enjoying constantly bringing attention to my own health. I do so for one reason, to bring attention to this national health crisis. A health crisis that could easily be YOUR crisis.
When you tell a lyme patient we are looking better, we worry that you think the struggles of the illness are behind us and we are close to being recovered. This is the furthest from the truth. Let me use the past two days as an example. Yesterday I felt like going to church. While at church I continued to feel ok. Unfortunately, Jenna, who is at the beginning stages of treatment, was feeling sick and we had to leave early. After church I took a two hour nap and when I woke up I felt like getting out of the house and doing something. We will ignore the fact that I had spent the previous two days in bed. We will also ignore the lack of house work that had been done over the past few days. It is summer, and I wanted to use my healthy day to enjoy the outdoors! I was hoping the kids would want to join us on a summer excursion. Chelsea was struggling with pain and fatigue and wanted to stay in bed. Jenna wanted to come, but her vertigo was making her nauseous. Because I knew how bad she wanted to get out and do something, Scott and I went and bought some more Dramamine (we were out of course, three of us needing it so often tends to cause us to run out of it easily). Thankfully, the Dramamine did the trick and we were able to head to Seawall with Jenna and her boyfriend. It was a short trip, and wore us all out. Luckily, we had some pizza kits at home making supper easy to make. It was a early night in bed for everyone.
WooHoo! I had a good day, sometimes when I have a couple of good days in a row I trick myself into thinking it is going to be clear sailing from here on out. Wrong! Seriously, if I can be that delusional when I am living it, how can I not expect others to think the same way?
Then today, talk about a buzz kill. Not only has today been horrible, it has been one of the worse days I've had in months. I wasn't surprised, just disappointed. I wake up every day hoping for a good day. In reality, I am having more bad days then anything. I know it's part of the course, but it still is frustrating. If I am tired of being sick I can't imagine how tired everyone else is of hearing about me being sick. The downward turn isn't because treatment isn't working. It's because treatment has worked so well on lyme and babesia we are now targeting bartenella more seriously. This is how this disease works. One step forward, four steps back. Most people only see me on the one day I am well. So, like most people in treatment for lyme, we feel like the four days we aren't seen are being ignored. I know this isn't the case, at least purposefully, but it still makes us feel invisible.
I originally logged on to update you on the whole family. There is a lot to update. I will do that in my next entry. I just really felt like I need to share this with you, mostly because I was a tad judgmental when other lyme patients expressed this frustration. This is my way of saying that I get it, and I'm sorry for passing judgement. To my friends who are reading this, don't stop telling me you are glad to see me or glad I am improving, but along with those comments, ask how I am doing overall. That way I don't have to feel like I'm lying when I smile and nod in agreement, or feel like a looser if I correct you in how I'm really feeling. Actually, it is good for me to be reminded how far I have come. I do tend to get lost in where I am at right now. Whenever someone tells me how good I am looking, I use that comment to remind me of where I was at only a few months ago. I use my good days as bench markers to help me stay focused on continued improvement instead of feeling lost in all that is difficult about this disease.
No comments:
Post a Comment