Most times when I am sick, or when my disease flares, all sorts of people tend to come out of the woodwork. Some try to help, and some just want to find out the latest info to pass alone to the next gossip in the phone chain. Unfortunately, most people don’t understand the day-to-day roller coaster that comes with a disease that can change in the blink of an eye.
I have briefly covered this subject before, but there are so many different emotions and thoughts that go through my head when things get worse — even for a day, that I thought it deserved a serious look at. Most healthy individuals do not have to worry about the weather affecting their health, if the fall they took three days ago will result in a permanent injury, or if they will have a bad day because they forgot to take their meds the night before. Because of this, it is very hard for most people to understand the emotional and mental strain that people with illness can undergo.
I am sure that all of you have heard someone say “it’s not knowing that’s the worst part.” Well, this is especially true when it comes to your health. Imagine waking up the day before you have something special planned, and you are feeling great. It stands to reason that you will anticipate feeling well for your big day. Even if you know that it may not happen, your subconscious mind will always give you some bit of hope. Unfortunately, with a disease like RA, nothing holds true to patterns or expectations. You are just as likely to have the most disease free day of your life as you are to not be able to get out of bed in the morning.
This kind of uncertainty, as I said, can play havoc with emotions. If some new breakthrough medical procedure could tell me which days I was going to hurt and which days I was going to feel great, not only could I plan my life, but I could stop worrying if that big date I’d been looking forward to was going to happen. It can make an already hard to deal with illness unbearable.
Lately, I have been experiencing this myself. When I was younger, I would stay out until four or five in the morning, without any ill effects. Even with the disease active, I would simply take a swig from my trusty liquid Tylenol bottle which I carried everywhere, and things would be right as rain. Well, as “right” as it gets with me. Even with the low-grade fevers that the RA brought, I was able to live my life in a fairly normal manner.
Now, it’s a different story. While I do not stay out past two in the morning very often these days, when I do, it ends up being a very painful proposition. When I wake up the next day I feel as if I have a hangover. Yes, as unbelievable as it sounds I now get a hangover just for staying out late. The worst part is that it only happens about two-thirds of the time. So, I have to decide if staying out late is worth the potential day long nausea and light-headed feeling that may plague me when I wake up.
As you can imagine, this makes sharing your life with someone a bit of a chore. More than a chore, actually. It often occurs to me that the person I will end up with will have to be supremely understanding. Relationships with a chronically ill individual are something we have discussed before, but never in regards to having children. This issue weighs on my mind more and more as I get older. There is no staying in bed when you have kids. If something has to be done and you are the only one who can do it, then you must! Will I be able to carry this burden? Will there come a day when I have to make a horrible choice between disappointing my child and hurting myself permanently? The correct answer is that there is no choice at all — you sacrifice yourself for your kids. That doesn’t mean it weighs on the mind any less. Will this blessing/burden end up being the end of me? When I begin to contemplate the future, my mind fills to the point of bursting.
There is another problem that weighs on me, and it is something that ensures I will never be certain if my illness is under control for good. Throughout the course of my disease, very few medicines have been successful at keeping the Arthritis at bay. When I do find a winner, though, there is always a “statue of limitations,” so to speak. You see, every time I find a medicine that is successful at quelling my disease, it only remains effective for two years at the most. My theory is that my body is adapting to these meds, and it takes two years for that to happen. I have been told that this is impossible with the new bio-drugs (Enbrel, Humira, etc), but I am still suspicious. Either way, the fact still remains. This is the ultimate uncertainty, as I cannot ever be sure that a medicine will keep me well for a prolonged period of time.
I don’t want you to think that I am writing this to elicit sympathy or pity for my situation. In fact, quite the opposite. I want to relate this issue because it is important to keep this in mind when you are dealing with someone who is ill. Many people who suffer from chronic pain tend to break down in the first years after our diagnosis. This is because it takes time to find a way to deal with the day to day uncertainty of the disease. Each individual has to figure out how to deal with it in his or her own way. Sadly, some are never able to comet terms with their situation, but most find a way to cope. It is also why so many people who suffer from chronic disease are able to handle the normal stresses in life with “ease.” When you have to worry about getting up and walking, that overdue bill seems small in comparison.
I was asked recently if I had the choice, would I choose to live without Rheumatoid Arthritis. I may have said yes if it was a only a matter of saving the people who love me from the hardships that caring for me inflicted upon them. Barring that reason, though, I could not answer the question. The RA has inflicted great pain and anguish on me to be sure, but it also has made me the person I am today. I simply cannot imagine what life without disease would have been like, and I am happy with the person I have become (finally). Sure, I was angry at the world for a long time, that is a natural response. But now would I choose not to be sick? I cannot answer except to say that dealing with the mental issues of being chronically ill has made me who I am, and being me is something I would never give up.