Living with RA

WARNING!! This is a very long, and emotional post. I am laying myself raw. If you can not stand to read the whole thing, then don’t. Please don’t criticize, or pick me apart for this note. This is me right now.

I have been living with chronic illness for about two years now. There are been so many times I have been told what it is not. What it might be. How to help me. What to do. What not to do. My life hasn’t been mine in a long time, and I have had no idea how to handle it. I know I am not the worst off, and so I feel guilty for all of the frustration and hurt I feel from this.

Some of you see me as a strong person who can handle anything, and take on the world. In all reality, I have been slowly slipping away from everyone and everything I love. Each time I get knocked off my feet by my illness, I am reminded of how weak I really am. That no matter my will power, I am sick. I AM SICK. I can not get rid of this sickness, and I need to learn to live with it. That is hard for me to accept. Every time I find a new sore, or I wake up in the middle of the night from pain. Whenever I can’t even make it up the stairs to tuck my kids in at the end of the night, it is such a foreign, yet now familiar feeling. I can’t help but be angry at the world for everything I am going through. Of all my hardships, why add something that will take my already difficult life and make it nearly impossible?

Now, I am not asking for pep talks. Please.. PLEASE.. keep them to youself. At this point they only frustrate me, and make me feel worse. I know that makes little to no sense for those of you who are reading this, but that is how I feel. I am trying to find ways to comfort myself, and find a way to cope with this. I have tried talking about it to people, but it does nothing for me. I have tried reading about it… and it just scares me. I have not gone every route available just yet, but I figured I eventually will. I don’t even feel halfway to being ok, but I have to keep telling myself that I will.

Again… I don’t need anyone telling me that it’s going to be ok. UNLESS you have a chronic illness yourself. Unless YOUR immune system attacks your body, and you have to go through what I am going through. I do not want your advice unless you are supporting 3 children on your own while trying to emotionally and physically go through what I am going through. It just upsets me.

The whole reason for this post is so that anyone who cares enough to read my notes can get a bit more insight into the inner workings of my life. I have been going online a lot the last few days; suffering from an intense SUDDEN onset of strep, due to my lack of immune system. Today threatened to lose my health insurance because of my lack of appearance at work… DESPITE the fact that I have helped this company SO much the last few months, and had a hand in CHANGING the way it does and will function. I literally wrote the book on training for TWO departments. I understand the concern… but I can’t help but be hurt by this. Punished for my chronic illness, though I out perform those who are there daily by MILES. I found a great page online that talks about what not to say to someone with chronis illnesses, and I have to say… The majority of you, if not all of you, have said at least one (if not more) of these things to me.

Worst Things to Say to someone with a Chronic Illness

1. The one that tops it is ’but you don’t look sick.’ 96% of chronic illness and disability is invisible. People expect sick people to look a certain way, and if they don’t, they do not believe the person is chronically ill.

2. You need to think positive. This one is quite annoying. If thinking positive would cure us, we wouldn’t need toxic medications…it’s not our fault that we have a chronic illness and being told to ‘think positive’ implies that we are somehow to blame for our illness.

3. Maybe you need to get out more. This is especially infuriating if you’re too ill to ‘get out more’. We do not choose to be house-bound and if we could, we would get out more. I was house-bound for 2 years and hated it, but there was little I could do about it.

4. I wish I had the time to sleep all day. Many people seem to think we enjoy being at home and falling asleep all day. Again, we do not choose this and it’s hurtful when people think we choose it. Grr.

5. Maybe you need to exercise. Yes, I do understand that exercise can be beneficial in some cases. But it is very hard to exercise when you’re barely able to get out of bed and dress yourself. We’re not lazy.

6. Get well soon. I wish!

7. It’s all in your head. Doctors are especially prone to telling chronically ill patients this. When explanations for symptoms cannot be found, it is automatically assumed that the ill person is imagining or faking or exaggerating it. Another GRRR, this time in shouty capitals.

8. Everyone gets aches and pains. But not everyone needs painkillers and toxic medications to deal with it.

9. You just need more sleep. I already sleep and nap enough during the day, because at night, pain often
keeps me awake. People must think we’re party animals, staying up all night! (We still get hangovers even if don’t drink).

10. You’re just depressed. Firstly, depression cannot be described as ‘just depressed’; it is so much more than that. When I get it, I go completely numb, cannot talk, can’t move, do not eat and I don’t get out of bed. It is the worst feeling in the world. I completely detach from myself and wonder if I’m real or not. Secondly, depression is either a response to chronic illness or a primary symptom (e.g. as in lupus, fibromyalgia, chronic fatigue syndrome, MS etc.). Being told you’re just depressed is not helpful at all.

11. There are others who have it worse than you. But suffering is subjective and each person’s idea of pain is different to someone else’s, and you cannot measure it. We’re not competing for the Sickest Person of the Year Award. We should not feel guilty, because wherever we go in life, someone is always bound to worse off than someone else. That’s life. This is my body, my pain. Do not tell me what to feel.

12. Maybe you need to improve your diet. Again, there is the implication that chronic illness is somehow our fault; that eating the wrong diet caused it. In many cases, chronic illness sufferers lose their appetite or are on steroids (which often increases appetite) and both can make it difficult to eat an extremely healthy diet. The other thing is, chronic illness can make us feel pretty poorly. If eating a yummy cake makes you feel better, then go for it.

13. I wish I could sit on the couch all day watching TV and not go to work. Sitting on the couch all day watching TV is incredibly boring, but again, we do not get a choice. If we could work, we would. I’d rather earn a decent salary than paltry benefit payments, but what can we do.

14. It can’t be that bad. Well, how do you know? Would you like to swap bodies with me for 24 hours??

15. My aunt had this condition and she got better. Every chronic illness sufferer is different; it is wrong to paint everyone with the same brush and put unfair expectations on a chronically ill person.

16. You’re sick, again??? Like I choose to be!

17. Its just stress. Again, not everyone with stress needs to take painkillers and drugs to deal with stress.

18. No pain, no gain. But chronic illness is not like being a sports-person or having a bikini wax. Also, how about we swap bodies again for 24 hours?

19. Are you sure you should be taking all these meds? Last time I checked, you did not have a medical degree.

20. Can’t you just take an aspirin like everyone else? Er, no.

21. ‘These meds are very addictive’, the doctor says, shaking the medicine bottle. ‘We don’t like to encourage their use.’ Doctor, would you like to swap bodies?

22. You just need to drink more water. I hear this every time I mention that lupus can affect the kidneys. Grr.

23. You’re always too sick to hang out. Stop being anti-social. I’ve lost many friends due to a lack of understanding. Over the years, I’ve learned that if ‘friends’ are going to act like that, and then they’re not real friends.

24. You just need to take your mind off being ill. It is very hard trying to take your mind off illness, if you’re in pain and extremely fatigued 24-7. What do you suggest? Jigsaw puzzles?

25. You need to be strong. Sometimes, chronic illness sufferers are forced to wear a mask; being ‘strong’ to please others. We do not need to be told to be strong if we’re already are. The strongest person in the world will get bad days. We all do, because we’re human and we need to let our feelings out. Bottling our feelings up can be psychologically damaging. Do not feel guilty about having bad days.

I have been angry at and hurt by almost everyone I know, though the majority of you did not know it. I have hidden my true emotions about this situation so that I didn’t hurt any of my friends and family back. Minus one person. Jeff.

Jeff has been the only one who has been there for every step of this process. Watching me on my roller coaster of emotion, my ups and downs. My pain. Now, he has said almost EVERY thing listed above. And it has hurt me… deeply. But I need to remind myself that he didn’t know. I have lashed out at him left and right, as if he was responsible for my pain. Both personally, and publically.. I have humilated him, put him on display and taken all of my anger out on him. We have had our ups and downs, but he has been nothing but good to me. Taking care of my kids when I have not been able to get out of bed. Picking up medications. Taking me to Dr’s appointments, surgeries, etc. Being there for me every day while I went through this whole ordeal. He was not only emotionally supportive, but did everything I needed done. He has been beter to my children that their own fathers; better to me than anyone else…. yet I have forced all of my irritation.. all of my anger onto him. This is the worst thing I have ever done to anyone, and I have no idea why or how I even managed to do it.

Just like I didn’t know when my sister Mary was diagnosed, and I would feel hurt when she would lash out at me. When she would get sick, and I would not know how to help her. When I would stand there and wonder if she was being dramatic. We all make mistakes, and I am NOT clean of the ones above. I wish I could take it all back, and know how to comfort her. Know how to comfort myself and not treat Jeff the way that I have. But I can’t… and neither can Jeff. He can not take back the moments that he hurt me by doing all of the above; purely out of ignorance. He had the best of intentions. He can not take it back. None of you can. It was not your fault, it was not my fault, it was just a lack of understanding and knowledge. Which is why I am posting this.

Chronic illness, and chronis pain is very much not understood. Rheumatiod arthritis, and other auto immune diseases, as well as musculatory illness, are very much often thought of as an eldery illness. That when you are old, and run down, these are the things that happen to you. There are people born EVERY day that suffer from this pain from the moment they enter this world, if not before. There are people who go from normal, happy, active HEALTHY young adults (or even children) one day to bed ridden and in exhausting, excrutiating pain the next. It can be slow, and it can be caught early. Yes. It can be treated. It can also hit you like a bag of sand, knock you on your ass, and not be diagnosed for years. All the while you suffer daily, not understanding why your body has turned on you. Blaming yourself. Creating such inner loathing because you know you are suffering, but nobody else knows. Is it really all in your head?I could go on like this all day, week, month, year… but I won’t. I just NEED some of you to understand. I don’t want to talk about it. I don’t want to hug. If you want to do something for me, come clean my house. Pick up my girls and take them to the park for an hour or two. Give me a break, and let me rest. Don’t criticize me and judge me for the unfolded laundry in my livingroom. For the counters that need to be wiped down. For the desperate vaccuming my house obviously needs… Allow me to heal. DO NOT offer to help me if you are not willing to. Do NOT say “Let me now if there is anything I can do to help” because we all know that is such a bullshit line. Unless you truly mean it. You want to help? Come to my house and scrub my toilets. Wash my dishes. TAKE OUT MY GARBAGE! That will help me. Call me selfish, and call me a bitch.. but your “I am sorry” and your “I am here for you if you need to talk” are usless to me right now. I SO much appreciate the sentiment, and I am NOT discrediting anyone for their love. I feel your love… but love without action will not help me heal. I am going to end with something I found from a great blog I discovered recently. This is something I need to start telling myself every day. Whether it is 6 months or 6 years when I am finally ok again, I need this. I need love. I NEED support. No matter how much I push back, and push you away, know it is not your fault. It is just me trying to accept everything I was, everything I am, and everything I am going to be. This has been a LIFE changing discovery for me, and I am dealing with it the best way I know how. I am just asking for some understanding. Thank you…

10 Things I’ve Learned From Living With Chronic Illness

1. Getting all of the rest that I need does not make me lazy. Even when I’m not moving, my body is expending a huge amount of energy on powering its overactive immune system, and on defending itself from the subsequent pain and inflammation. So while many times it might look like I’m not doing much, I’m still probably doing more than most others.

2. No matter how much it hurts, I still have to find a way to move. (Of course, I’m not advocating for movement that results in injury/harm.) During one of my first major bouts, I thought that the best thing to do was to move as little as possible. This really didn’t lower the pain, but it did eventually result in atrophied muscles, months of daily physical therapy, and having to learn how to walk again.

3. If I’m going to be in pain, I might as well be doing something that I enjoy. I may not be able to do certain things like I once used to be able to, but chances are I can still do more than what I thought possible. Learning this lesson, firsthand, is priceless for my mind, body, and soul.

4. And for those moments when it’s just not possible to do something, cancelling at the last minute is perfectly acceptable. I’ll be honest, and I’ll tell you the exact reasons why I’m not able to participate. Please don’t take it personally…I’m just as disappointed, if not more, than you are.

5. If you are a doctor or healthcare professional, you must earn my respect. I, the patient, will work just as hard to earn your respect. I will ask lots of questions, and I will listen to what you have to say. When it comes to treatment options, though, I will be the final decision maker. (After all, no one knows my body better than I do.)

6. Achieving acceptance is hard. (I used to think that doing so meant “giving up.”) Just when it feels like I’ve accepted everything there is about my illness, something pops up, and I want to deny everything, all over again. With chronic illness, I don’t think there is such a thing as “complete” acceptance…there’s just a continuous journey, back and forth, between denial, acceptance, and so many other emotions.

7. No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me. Yes, it’s fine–sometimes even healthy–to feel angry and frustrated…but I have to know how to release this energy in a way that doesn’t harm myself, or those around me.

8. Never, ever, compare my pain and illness to those of others. My illness is mine, and mine alone. I’m completely entitled to feel everything–emotions, symptoms, and otherwise–that results from living with my illness. (I’m entitled to feel everything, that is, except shame.)

9. While a positive attitude isn’t going to “cure” me of my illness, it’s certainly going to make it easier to overcome the challenges that I encounter on a daily basis. Yes, I do have occasional periods of doom and gloom…but I make a point to pass through them as quickly as possible. The mind is a powerful tool, and I must use it to my advantage.

10. Just when it feels like my world is going to fall apart, the best thing for me to do is to sit down, and take a deep breath. And another one. And another one…until I realize that everything is indeed okay.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!


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