28 May 2006

What Rheumatoid Arthritis Is Like: A Letter for Family & Friends

What Rheumatoid Arthritis Is Like: A Letter for Family & Friends

Stress is a serious issue for many of us with RA in that stress tends to worsen how we feel. This is true even with those things that are good experiences but are still stressful. For me, parties, while fun, mean stress. That tends to make me tense which tends to cause me to get stiffer leading to increased pain. Being busy alone leads to pain even when being busy at fun activities. There are days that I know better than to even attempt doing certain things because they are more than my body can handle. Respect that I know how I am feeling and don't add to my stress. Don't try to guilt me into pushing myself harder than I ought to because it is what you think I should do. You do not live in my body, do not feel what I feel, do not have the limits I have. So do not presume to tell me what I should or should not do. Yes, my health affects everyone close to me. No, it's not fair. But in the end, if you can't deal with it, that is your problem, not mine. I know how to best care for myself. Avoiding stress when possible is one of those things I need to do to care for myself.

Do not make me feel guiltier than I already do over the limits my health has placed on me. You think I enjoy having these limits? Nope. I'd like to be healthy. But, it is just not something that everyone can have. I don't like needing to rest, needing to cancel plans at the last minute, needing helping with basic tasks that I've done for myself most of my life, etc. Chronic illness has a way of destroying a person's feelings of self-worth. That brings on plenty of guilt by itself. Many people with RA are type A personalities where before their diagnosis, they were the type to thrive on being busy all the time. When that changes, there is enough guilt I place on myself that I don't need others adding to it. Some of the best advice I've been given is to do all I can to stop the guilt I tend to place on myself as soon as I recognize those feelings. What did I to that requires me to feel guilty? Did I ask for health problems? Do I really want to be unable to do things I used to do? Not likely. So, why should I be made to feel guilt over my health? Have enough respect for me that you don't add to the guilt that I already need to fight.

It is possible to walk to the park one day and be unable to do so another day. The reverse is also true. Some days just moving around the house is hard enough. This can be said of virtually any activity, no matter how “easy” it is. Some days, just moving is an accomplishment.

Some days I need splints, a cane, ACE wraps, a walker, crutches or even a wheelchair. Other days I don’t. Just because I don’t always need those helps, doesn’t mean I’m faking it. Those are simply tools that make my life easier to handle. They might allow me to do something I'd be unable to do without using those tools. They may make it easier to do a difficult task. Needing these items does not make me weak, is not giving in to my disease, is not letting the disease win, or any of the other negatives I've been told about myself for using a tool I need to make my life easier. Is it something I like? Not really. But which is better? Not using a tool I need to make life easier simply because I “shouldn't” need it? Or using any tool available to me in order to have a better life? To me, it makes more sense to use any tool available to make life easier or better. If using a wheelchair means I can go out more often with less pain, then why should I be ashamed of that? I might not like needing it, but I am definitely not ashamed. In all honesty, the people who have learned to use whatever tools at their disposal to have a better quality of life are a lot stronger than those who avoid those tools for whatever reason they come up with to justify it. Knowing when to accept help takes quite a lot of emotional strength.

My pain can travel from joint to joint from day to day or in fact, hour to hour. Just because this happens does not mean it is any less real.

I sometimes need a handicapped spot. I don’t like it. But, I need it. I may look healthy enough that I don’t need it but walking out of the store, I will likely be having problems walking. Most people who do need a wheelchair at times do not like to need one, especially those who are younger and those who look perfectly healthy. Yelling at me, accusing me of being lazy, assaulting me, taking your anger out on me or telling me I don't “deserve” to use a handicapped spot is not something a stranger needs to be doing. I wouldn't allow someone I love to treat me that way, I am even less willing to put up with a stranger doing so. If you don't like where I've parked, report me to the police. In fact, I will be more than happy to get in my car and wait for them to arrive. But, know that you're the one who will, at best look like a petty idiot and possibly be considered to be filing a false report. If you've simply yelled at me, I am likely to just laugh at how dumb and intolerant you look. But if you dare lay a finger on me or threaten me, I will be making a complaint and making sure there is a record of it. In fact, if you act like an idiot and threaten me, I will more than likely be using the video feature on my cell phone for proof. And it will become public! Why? I have nothing to hide about my illness. I try to avoid taking my illness out on others. But when someone attacks me, I've learned the best way to handle it is to not give in to the anger. For one, it keeps me from looking like an intolerant jerk. Two, I have better control than to allow a stranger to get to me.

The medicines I take may have nasty side effects. I know this. I don’t need reminders of this from someone who doesn’t live in my body and feel my pain. I don’t enjoy taking the medications but I have a disease that needs to be medicated. It is not easy but it is my life. If you can't handle it, then that is on you, not me.

Don’t lecture me about the addictive nature of pain medications. I know the risks. And don’t judge me for using pain medications. It doesn’t mean I am weak. It means I have pain. If it is a choice between pain medicines allowing me to live a more normal life and not taking them out of fear, I choose having a more normal life. Would you tell someone who is on meds for high blood pressure or on insulin for diabetes that their meds are addictive? No. You would realize that there is a medical issue that needs treated and give them your support. Well, guess what? Pain is a medical issue that needs treated just as much as any other medical issue does. It is not right to allow those who have abused a medication to color your perception of someone who takes it exactly as prescribed. Yes, addiction is an issue for some people who are on pain meds. But, just because I take pain meds to treat pain does not make me an addict. What it makes me is physically dependent on my medications. Addiction is a mental compulsion to take an unnecessary medication or to take a medication in inappropriate ways in spite of the fact that it is dangerous and not needed. Another difference between addiction and physical dependence is that addicts tend to take pain meds to escape some part of their life; people with pain tend to take pain meds to have a better life. For someone with pain, treating it is only humane. Yes, someone in pain does typically become physically dependent on taking their pain medications. That is not anything different than someone who has high blood pressure taking meds to treat it or any number of other diseases that no one questions the treatment of. But simply because there are people who abuse pain medication, most of which do not even have physical pain, society deems anyone on those meds to be an addict. That is rude and offensive. If I am taking my meds properly (and to be honest, many of those who take pain meds tend to take less than we are allowed for a variety of reasons) for a valid medical issue, what business is it of anyone but myself and my doctor (and those I trust enough to make it their business)? Quite honestly, I do not care what strangers think of me. The hard part is when those who profess to be my friends or love me are less than understanding. But for me, I refuse to allow the negative opinions of others about the meds my doctor(s) and I choose add to my stress. Stress leads to more pain which leads to needing more treatment. If you don't like my med use, you are free to avoid me. Don't be surprised if I am not willing to listen to your negative opinions though or if I refuse to discuss aspects of my medical care with you. It really is not your business!

Standing, sitting, walking, and laying can all be painful. Life is unfortunately painful. I have pain, swelling, limited energy, joints that don’t move right and other symptoms. Sometimes, I’m grumpy because of this. I try not to be but sometimes it comes out despite my attempts to be happy and nice. In addition to the pain and other symptoms, I may be feverish, feel tired, or even have joints that don’t look “normal”. This is all due to RA. I may have digestive issues thanks to RA. Lung and heart issues are also possible with RA. RA does not affect just the joints, it is a systematic problem. And when combined with the various secondary conditions that can be associated with RA, there isn't much that can't be affected by it.

Please don’t suggest “cures”. RA has no cure (at least now). So, I have it, it is incurable. Live with it…I do. I trust my doctor and the treatment plan we’ve worked out between us, so please don’t try to convince me you know a person who “cured” themselves with diet, supplements etc. It may have helped them or it may not have. It could just be the cyclical nature of RA that fools them into thinking they’ve been “cured”.

If you’ve ever broken a bone, think of that pain and magnify it. Then imagine that all over your body. That’s how I feel at times.

When I travel with you, please understand that for my health, I may need to have frequent stretch breaks. I’m not doing it to slow our trip down. I don’t take joy in having a hard time getting moving after sitting for awhile. Don’t hassle me over it.

Don’t assume when you hear the word “arthritis” that I mean osteoarthritis (OA), which is what most people think of when hearing arthritis. There are actually over 100 diseases that fall under the umbrella of “arthritis” and some affect more than just the joints as RA does. Most people associate the word “arthritis” with the wear and tear arthritis of aging, which is osteoarthritis. I may have OA as well which is that very type. But, I have rheumatoid arthritis, which is an auto-immune disease that causes my body to attack itself. I’m not too young for either RA or OA or any number of other diseases that are thought to be older people's problems. Infants get RA as well as adults. When diagnosed as a child, it is termed juvenile rheumatoid arthritis, juvenile arthritis or juvenile idiopathic arthritis (JRA, JA and JIA respectively) Unfortunately, OA is not just a disease on its own; it can come as a secondary disease to RA. So, I’m not too young for arthritis, please don’t tell me I am. And if you still think I am, well, my body and doctors say different so I’m going to listen to them, not you.

I may need to rest more often than most people. It’s not that I’m lazy. It’s that RA causes fatigue. And that fatigue can come and go or be persistent. Imagine having the flu all of the time. In fact, the fatigue can be one of the harder parts of RA to deal with for many of us. I've had JRA since I was 7. I became accustomed to the pain long ago. But the fatigue is not something that has even been normal and easily acceptable to me. I'd rather hurt in all honesty because it can be treated in a variety of ways. There's not much I've found that helps the fatigue.

I may not have “just” RA. There are many other diseases that can go along with it. Those diseases also take their toll on me with symptoms, medications and problems. They also tend to exacerbate each other. When one disease flares, it tends to have a ripple effect and sets the others off.

I don’t enjoy turning down certain activities due to my RA. I may not always turn that down; it is just that particular time may be a bad time for me. Don’t assume I’ll always turn things down and stop asking me. That makes me feel so left out. But also if I do say no, don’t try to make me feel guilty. And if I say yes, but have to change my mind later, please don’t be angry. I don’t like doing that but sometimes despite my best planning; I just can’t make my body cooperate.

There are things I can do that I also enjoy doing that may look like a struggle to you. Please don’t try to “protect” me by taking things from me or stopping me from doing something. If I’m doing something and not asking for help, it is because I am ok doing that. I’ll likely ask for help if I need it. But also know that I may be too proud or stubborn to ask for help too. If you wish to help, don’t just take over. Ask if you can help. If I say yes, ask what the best way to help me will be. If I say no please don’t be offended, it is likely something that I may struggle with but gives me pleasure to do. (This doesn’t apply to spouses and friends who have known you for long enough to have worked out non-verbal clues of needing help.)

Just because I look healthy, doesn’t mean I am. RA is in many ways an invisible illness. Normally, it takes many years for the effects of RA to be seen visually. Even those who have had RA for many years may look healthy.

Please do not think it is funny to force me to shake hands and then use a crushing grip. It’s not funny and it’s quite painful to be honest. Also please don’t assume because I don’t shake hands that I’m a snob or anything other assumption. It’s just quite painful, even if my hands look normal.

Please keep in mind that as frustrating as it is for you to deal with my RA, it is more so for me. RA typically means some losses for me; whether it is activities I enjoy, my job, or my ability to do some of the things I found simple before. To me, it may seem like I’ve lost my identity. Typically, people with chronic diseases, especially the newly diagnosed, go through the five stages of grief: anger, denial, bargaining, depression, and finally acceptance. It is called a cycle of grief for a reason. It is not a linear process. Not everyone has all five stages in the order they are commonly listed. I've never had much issue with the bargaining stage and only rarely does the depression hit, usually when there are other stressors beyond my health that would cause depression on their own. And once we accept our RA, that's not the end of it. It's not like acceptance is a magical land we never leave once we arrive there. Even those who have had RA a long time may go through the stages many times after their initial acceptance of RA. There are many things that can throw a person into one of the other stages after they've accepted their RA. Stress, even good stress, can send us into one of the earlier stages. Flares can do so as well. Adding a new diagnosis of another secondary condition will cause us to experience the stages as well.

Do not assume I’m “just depressed”. Depression does go hand in hand with chronic diseases whether due to the unrelenting pain or stress or any other number of reasons. I don’t need to “get out more” and expect it to make me always feel better. Sometimes that itself can lead to depression if I am facing that I can’t do as much when I go out.

Also please don’t try to convince me that changing my diet will “cure” me. Recall that I said RA is incurable. Changing my diet may help with symptoms but it doesn’t help everyone. Personally, I did the whole avoidance of certain foods thing when I was a kid. It made no difference at all in how I felt.

Also, I don’t need to be told I need more exercise. I’d like to be able to exercise more but may not be able to. That is frustrating enough. I don’t need to hear from others that I’m not doing enough. I may be incapable of exercising certain ways. I may have been told to avoid exercises at a particular time to prevent exacerbating an issue. Unless you are intimately involved in my care, you have no right to tell me what my body needs.

Please do not tell me that my choice of treatment is invalid because it is not conventional.

Stop springing surprises on me. I cannot always handle them. I need to live life one day at a time most of the time. It is unfair to either me or you to make plans that are a surprise to me and spring them on me. Spontaneity is not really a good thing when you have daily pain. I need to plan my activities based on my pain levels. Some days, having people around is a distraction that's needed. Other days, trying to concentrate on fighting the pain while also visiting with others only adds to the pain. It's not fair to either you or me if I am in pain and unable to be good company. Respect me enough to not spring surprises on me. Some days, all you can do is breathe through it. It is on days like that that I not only prefer to be alone but I need left alone. I can be rather short-tempered when dealing with pain and it truly is not a reflection on the person who experiences my temper. In fact, I hate when my mood is bad and I can't easily control my grumpiness. It tends to cause both me and the person dealing with me to get hurt, frustrated or angry. I'd rather not hurt others. And when I am in a flare, it is that much worse. I have a reason for being a solitary person. It's best for everyone concerned. It is bad enough when I am in a foul mood thanks to my health, it does not need to be inflicted on others, and is one of those limits where I hate having to set it but I will do it each and every time I need to. Part of that could be just not wanting others to deal with how I feel. Part of it is a coping issue for me. I can handle my pain much better at times if I am not trying to worry about being “up” or “on” or sociable. There are other times that the pain is not so bad and being sociable isn't as hard and is in fact a good distraction from the pain. But, if you surprise me, it takes away my choices in dealing with my pain the best way I can.

If I shy away from your touch, it is likely nothing to do with you and everything to do with pain. Some days certain things hurt, like the gentlest of hugs while other days not much hurts because things are numb. [On a specific and personal note rather than the generalities I tend to think of as experiences most of us with RA have felt at one time or another, scarily, for me, the numbness is part of that is worse than the pain. Most of the time, I would rather feel the pain than be numb. At least I am still feeling. I say that after all the months in the hospital in 2009 when I truly couldn't feel much in my arms and legs. In my arms, it was as if I were wearing long gloves that were tight enough to restrict sensation, and movement. It affected me from the tips of my fingers all the way up my arm to mid-way between my elbows and shoulders. Getting that feeling back was painful in so many ways and I am somewhat glad I don't remember much of the time in the hospital to be honest. But as painful as it was, at least I was feeling. My legs were numb from toes to mid-thigh. The feeling wasn't quite like in my arms where something was tight and restrictive but there was less sensation from what I recall. Less movement too. Even now, six years later, my hands and feet are still affected. But I had issues with peripheral neuropathy before the "long vacation" as we call it. And yes, that's just typical of the slightly twisted sense of humor that I've grown into. While it was not exactly fun and games for me; well most of the time, although to be fair, in the nursing home, there were quite a few incidents of fun and games; and it was rough on my loved ones, it came about because of the habit of picking on each other that we have. At first, I was going to call it my incarceration but that could be seen as bitter and in all honesty, there's nothing to be bitter about. It sucked but it is what it is. And I don't do bitterness too well. Then I jokingly accused Garrin of secretly loving that I was in the hospital as it meant a vacation from having to do all the things he does for me. And of course that meant he then said no it was a vacation for me from putting up with him or something to that effect. Gotta love when you can laugh together over the crap thrown your way!]

Don't take your fears about my health out on me. Talk to me before getting so upset that it is a problem. Sharing burdens tends to make them lighter. RA is a scary disease. Most people do not like hearing that it can kill a person, whether due to the effect the inflammation has on the heart, by causing a stroke thanks to inflammation (cardiovascular disease is a fairly common cause of death in those with RA and in the past, RA shortened a person's life expectancy by about 10 yrs or so when all other variables were considered. Now, I've read averages that range from 2-5 yrs for the most part. But most docs do not address it and most patients don't want to hear about it. To me, I'd rather hear about it but I won't force you to talk to me. But if you're not going to share the issue, don't take it out on me either. Just tell me you're working through a problem that you're not ready to discuss. I can't make sure to address problems as early as possible if I am unaware of them. Is it easy hearing that RA is disabling, requires a lot of treatment that can be scary and in fact, can kill a person? Nope. But, I'd much rather know and be able to keep an eye on potential issues than be left in the dark. If I can handle fears about my own health, then you need to do that as well without taking it out on me, without denying that there is a problem. Acting as if there is nothing wrong is denial. As I mentioned earlier, that's part of the grief cycle common to people who have experienced loss or who are facing loss. Denying that I have a problem might make you feel better, but it does me no good. It is unrealistic. Learn to share those fears without yelling at me and making it seem like it is my fault. No one is to blame. If you cannot manage to avoid taking that fear out on me, then you need to find someone who can help you deal with it. On the other hand, just as I would rather you not take your fears on me, allow me to work through my worries an concerns myself if need be. Yes, sharing a burden makes it easier to deal with. But there are times that I might not be able to pinpoint the issue. I need time to work through it to figure out exactly what is bothering me before it can be shared. Respect that I will share when I am able to actually communicate what is wrong. If I say I don't know, it means I don't know. If I say I am not ready to talk, then there is a reason for that.

Know that when I do things that might seem selfish to you, it is likely because I know what needs to be done to take care of me.  Society tells us to put others before ourselves. But when those of us with chronic health issues do that all the time, and we ignore caring for ourselves, we end up in worse trouble than we would have if we'd taken the time to get the rest and care we need.  I deal with feeling selfish for caring for my own needs and needing the help of others on my own, I do not need you to add to it.  In fact, I've learned the hard way that pushing myself to care for those around me while ignoring my own needs will backfire on me and likely end up with me in a crash and burn situation.  At best, I will end up flaring and need more help doing simple tasks that had I not pushed myself so hard to be and do everything for those I care about I wouldn't need. At worst, I might end up doing more permanent damage and being unable to do certain tasks for myself again.

Author's note: This would not have been possible without those of you who suggested ideas. For that, I thank you. If you wish to share this work with others please provide source link and © information.
© 2006-2015 Waynette Porter

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