I read this and thought it would be a great way for parents, siblings and friends to understand how a child can feel when they have Juvenile Arthritis….
While I am the one who has been diagnosed with Arthritis, its very nature means that it also affects those who share my life. As such, I want to introduce you to “Arthur”. Now don’t look so worried – I haven’t gotten involved with some new handsome and wonderful guy. “Arthur” is just the name I call my arthritis. Actually, its one of many names I call my arthritis but it is the cleanest and nicest.
You know how at some point in their lives, most kids will have a friend that only they can see? And just because others can’t really see them doesn’t mean that they don’t exist or aren’t real. Well “Arthur” is a bit like that except he isn’t very nice or even very friendly. And no matter how much I hate having him around and how many times I tell him to go away, nothing I do or say will make him leave for anything longer than a temporary holiday. But just like an imaginary friend, “Arthur” is only one part of my life and he doesn’t define who I am.
Having a disease like Arthritis can be quite isolating, especially for younger people like me. At my age, most of the people I meet (including some doctors) don’t believe that it is possible for me to have Arthritis. They treat me like I am crazy or making it up or just trying to get sympathy (or whatever). It is so frustrating not to be believed and constantly ridiculed or denied access to the help, information and support I need. Eventually it gets easier to stop voicing how I feel or asking for help, even with the people who care about me and know I am not making it up. This is not a reflection on how I feel about you and I am not trying to shut you out. I just need reminding every now and then that it is okay to say I hurt or need help and that you are there to give me that support and assistance.
While there will be times when you can see some signs of “Arthur’s” presence, there will be many others when he is much less noticeable but no less imposing. In fact, most of the time I am not even going to look classically unwell. There will also be times when I can feel pretty good one minute and be in severe pain the next. I know you find this scary and confusing and difficult to accept because I often feel the same way. But please don’t think that if I look well I am not in pain or that if I say “I can’t” that it doesn’t mean I don’t want to.
This unpredictable nature of “Arthur” is one of the hardest things to come to terms with and is the aspect that has possibly the biggest impact on our lives. There are things we can do to help overcome the issues resulting from the pain and the restrictions I face when “Arthur” is misbehaving but the unpredictability means that it is very difficult to make plans. There is just no way for me to know how I will feel on any given day (or even any given moment). And even if I take it really easy for a day or more before a planned event, I could still end up in pain and with restricted abilities on the day. I am then faced with trying to decide to “grin and bear it” so that our plans aren’t totally ruined or admitting how bad I am doing and risk having you decide to cancel an event that you were really looking forward to. And even if we do try and go through with our plans, there is always the possibility that I won’t last until the end or I won’t be able to enjoy it or even that you will not be able to enjoy it because of your concern for how I am doing.
You often ask me how I am feeling and I know that many times I just answer that I am okay even if I’m not or if I do tell you that I am feeling sore or are having problems, I don’t go into any detail. This is due in part to habits formed as a result of trying to avoid the ridicule or well intended but totally inappropriate comments that I get from many people when I try and answer truthfully. It is also due to the fact that it can be very difficult to explain what the pain and other symptoms feel like and the fact that the symptoms aren’t constant.
Regardless of what stage of the disease cycle I am in (a flare or good period) I can have days that are a lot worse or a lot better than “normal”. I could tell you the textbook definition of common symptoms (joint pain and swelling, morning stiffness, pain and stiffness in the muscles surrounding affected joints, reduced mobility, fatigue and trouble sleeping). But this is only part of the picture and doesn’t really explain how “Arthur” makes me feel or what the pain is like. And there is no book or similar that I can tell you to read to find this out because “Arthur” affects each of us differently.
I guess the easiest way to understand what the stiffness is like is to think of a time you have done some kind of activity involving muscles you don’t usually use. Generally the next day that muscle feels very tight. Well, when “Arthur” is active, that same feeling is experienced in and around my joints, regardless of what I have been doing. Usually this is worse first thing in the morning. Hot showers, the use of electric blankets on cold winter mornings and heat packs can help to ease the stiffness but there is no way to prevent it.
The pain associated with my arthritis is difficult to explain as it will come and go or change intensity or nature without warning. It will also move around my joints in the same way. At its mildest, my pain is more of a dull ache and feels a bit like the pain you feel if you press on a new bruise. Other times it feels something like someone is pressing a warm or hot object against my joints (but from the inside). Then there are the periods of sharp stabbing pain that I can only describe as having a hot fire poker stabbed in my joint. And as with the pain, the swelling I get in my joints also differs, from being quite fluid (a bit like jelly) to fairly solid when you touch it.
While these aspects of my arthritis are bad enough, I find the most debilitating symptom is the associated fatigue. Even on fairly good days, it takes a lot more effort to accomplish even the most menial task because a lot of my energy is being used by “Arthur” to attack my joints. Also, the pain and swelling often makes it hard to get comfortable and this makes it very difficult to get to sleep. There are plenty of times where I will struggled through the day and have trouble keeping my eyes open but I just can’t get to sleep when its time to go to bed. Instead, I spend the whole night tossing and turning. Because my body and joints then haven’t had a chance to relax, the following day is worse and I get stuck in a downward spiral until my body finally gives in to the exhaustion. So if you see me sitting down “doing nothing”, I am not being lazy. I am just trying to give my body a chance to stave off the utter exhaustion for a little while longer.
Another impact that “Arthur” (and even some of the medications I take to deal with him) has is what many RA patients affectionately call “brain fog”. When this hits, I have trouble with things like concentration and memory and I generally feel quite “dopey”. Things I normally do with ease suddenly take a lot of thought and concentration. I will start to do something and forget what it is soon after and I can even make silly mistakes like putting things in crazy places or using totally inappropriate ingredients or items for the task I an undertaking. The brain fog also makes typing or writing an interesting exercise. Somehow the words I want aren’t the words I type and its almost like I have written the whole thing in some foreign language. So please, if you get a written message from me that doesn’t make sense or you see me putting the keys in the freezer, don’t think I am losing my mind. I am just experiencing a period of brain fog.
“Arthur” can also affect many of the normal day-to-day aspects of our lives. The nature of these impacts will vary depending on how active “Arthur” is, what joints are involved on a given day and how bad the fatigue is. Sometimes it will be little things like having to sit when I would normally stand or using assistance devices (like chunky handled utensils and walking sticks). Sometimes I will need help to do things like opening jars, dealing with buttons or other small fasteners, picking things up off the floor or getting things from shelves above my shoulders or below my knees. There may also be times when I just can’t do some things that I would normally like the major housework (vacuuming, scrubbing, cleaning the shower / bath, unloading the washing machine, hanging clothes on the line, tucking sheets or blankets under the mattress, etc), carrying and lifting bulky or heavy things and walking more than short distances.
While you are not directly affected by the symptoms of my Arthritis, the impact of “Arthur” can affect you just as much as it does me. When “Arthur” is active and I need help to do things, the most obvious source of that help is going to be you. And while most of these will be minor inconveniences for you, the fact that there are some things I can’t do easily or without help will impact on the decisions you make about how to spend your time. Because of “Arthur”, whenever you think about doing things like working overtime or having a night out or going away with friends, you need to take into consideration what things I have to do during that time that can’t wait and how many of them do I normally need your help with. This doesn’t mean that you can’t do these activities. But rather than being able to make spur of the moment decisions that only consider your needs and desires, we will firstly need to have contingency plans in place for those times when you aren’t around to help me do the things that just can’t wait.
I am not “Arthur”. He doesn’t define me and I refuse to let him control my life. Whenever he tries to prevent me from doing something, I will always look for an alternative way to do it or at the very least I will ask for help. “Arthur” may rob me of physical abilities but he can’t rob me of my will and dreams. And with perseverance and determination, anything is possible. So, the most important thing you can do to help me is to treat me as normally as possible. I don’t want pity and I don’t want to be wrapped in cotton wool. I may need help doing some things but I also need to be the one to decide what I can and can’t do. That doesn’t mean I won’t be grateful if you took it upon yourself to do some of my chores or anticipate ways to make things easier. But always remember, the best gift you can give me is your love, respect and understanding because with you by my side, I can do anything.
Swollen Joints 