Another letter? Yes. Sorry, but I know this will clarify some things to you. I really hope you get this soon, because I really want this relationship to work. I don’t want you to “get this” later and maybe too late for you and for me. I’m still getting over the shock of you not believing me... it feels like a betrayal. I can’t explain why over the last 2 years, this condition has been getting progressively worse... but seeing those results made all my worse fears real. But in the long run, it’s better for me to face it now in order to lead a better life.
You’re right about one thing, you know. I can move my joints even though it hurts like a bitch. I could keep moving them and forcing them during a flare up, but that would be a huge mistake. I’m going to explain to you why. You need to know this for yourself too. But before I do so, I need you to explain things to me.
How could you have thought this the whole time and not tell me, how could you still continue helping me while feeling like I’m making everything up. “Everybody has pain... what makes your pain more than theirs?” I never said my pain was more than theirs. As a nurse, I would never be able to handle patients if I followed that belief... I would never give patients their pain medication because they couldn’t justify it. I’m just saying sometimes the pain is too much that I need a little help with holding bags, chopping veggies for dinner etc. You say that I would ask you to get a glass for me in the cupboard “because my legs hurt too much.” – which is bullsh*t. Such bullsh*t. I might have asked you to get a glass from the top shelf because it was too high to reach and yes it did hurt my shoulder to reach for it, and if it wouldn’t be too much to ask, if you could get it for me.
All this time, I seriously thought you were there helping me. That you actually wanted to help me. You are a logical, objective person, yes... but wouldn’t an objective logical person do research and find out more about autoimmune disorders before passing judgements like “what makes your pain greater than others” or “ you have pain, so what, just shut up about it and work through it. Just because you’re in pain doesn’t mean you can’t move.” I don’t think my pain is greater than anybody else’s. I never said that!!! And I never said it was the end of the world. I panicked the first month when I received the results... I told myself, oh my God, there goes my life, my independence, my ability to pick up kids etc. Etc... And, oh my God, I had the audacity to voice those worries to my life partner, the one I trusted, the one I looked to for help, for support and for encouragement... for love. Well what a mistake that turned out to be.
I don’t believe that I will be an invalid. The first shock and my previous experiences with dealing with older people with rheumatoid arthritis scared me, yes. But I don’t believe those things anymore. I would be lying to myself if I told myself that I can continue to live the way I’ve always lived before. I need to take better care of myself now in order to live better longer.
So that’s it. I can’t ever voice my worries, concerns about anything because they will be used against me in future arguments. And, I’m never allowed to say that I’m in pain... because that would be too difficult for you to bear... On top of it all, God forbid, that I ask for a little help. No, can’t do that, because that’s making excuses. “Would you mind helping me with the laundry? Because (and this will always have to be omitted in the future, of course) my elbows are aching bad.” You just don’t get it. It’s not that I can’t do it, it’s because the pain and inflammation is so bad that It makes it extremely difficult to do so. Pain = inflammation= joint damage. If I don’t stop myself now, I’ll be worse in the long run.
I understand that I have more medical knowledge than you do... but I would think that instead of throwing arguments at me he would ask questions like, “what is an autoimmune disease”, “what happens inside the body?”. But no, instead it’s: “You’re exaggerating. You’re making excuses. 60% of people have joint pain and they seem to be ok, why aren’t you?” Well, for one thing, many people have joint pain but they don’t all come from an autoimmune disease. Some come from past injuries and some come from osteoarthritis. Many people confuse osteoarthritis with rheumatoid arthritis. Osteoarthritis is deterioration of the bone and most of the time happens in old age. RA can happen at any age (even in young children) and it’s an autoimmune disease which basically is your body attacking itself with its immune system (white blood cells) that accumulate inside the synovial lining of the joints and push against ligaments and bones... That pressure and fluid eventually deteriorate the bone and the joint lining making some movements impossible. Although I am far from being there, (x-rays are clear so far), I was told that in order to prevent further inflammatory damage to the joints that during a “flare up” I have to take pressure off that joint and limit its use.
I found a trick, though and I’ve been reading about it. At the first sight of inflammation, when the joints are just a little swollen, I can ice it and then I will keep moving it. If I do the contrary and sleep in or sit for too long (like what happened last night), then the next day the joints are red, swollen and even more painful. So, I have to listen to my body and it’s not an excuse. I’m thinking about the future. One day, I hope you can understand this. You said that even though your knees are extremely swollen and painful you force them through it... What if it gets worse one day? What if one day, you actually can’t get out of bed due to the joint damage? Will you believe me then? Or will it be too late?
So I gave you an ultimatum. Do I really want to be with someone that I constantly have to defend my condition to? Do I really want to be with someone that doesn’t seem to be willing to help me because I can do it myself but in a lot of pain... which could only mean that this person doesn’t care if I am in a lot of pain doing stuff – even though this person has the capability to take some of that pain away sometimes by lending a helping hand. Which is another thing I don’t understand. If you truly believe that my pain is minimal and that I can just “work through it”, then why do you bother helping me? Why don’t you just say what you thinks: “I know you can do it, even though you’re in a lot of pain, but you can do it yourself all the same, so do it and suffer and I will just stay here and watch you suffer through it.” But you don’t do that, why? I used to think that you understood why I couldn’t do some things sometimes and that was why you were helping me, but now you’re telling me that that’s not at all what you believe.
I don’t understand why you couldn’t have just kept your mind open a little and stop thinking that we’re in the army. Don’t you understand that by forcing the joints that are slowly being damaged by the inflammation that it will just make them worse in the long run? That one day, the joints will give and then you won’t be able to move that limb at all??? I still don’t understand how a logical person would not at least look into rheumatoid arthritis and fibromyalgia to actually get more information before forming arguments against it? I need to be able to listen to my body in order to protect for the long term. I need to know when my joints need to rest and decrease their inflammation before it’s too late.
All this started because, I said that since this is technically “our money” that maybe I should have a say in what type of car we are getting. I said it might be easier and more convenient to have an automatic since I will have more flexibility and the incentive to drive more than if we got a manual. And then my mother offered to buy the difference for an automatic... and this is what got me to thinking how much easier it would be... but we had both decided long ago that we didn’t want to get my mom involved in any future purchases, I totally agree on that. But you brought up a good argument. If I’m having an off day and I feel like I can’t drive, I can’t drive – automatic or standard, period. The more I think about it the more it makes sense.
Hi, this is so sad, I am almost in tears, I understand everything you are saying, the bit I don't get is this, if this partner loved you enough, they would do these things anyway, a little help here and there even without your diagnosis, I really feel for you. Maybe I am just lucky , but I don't know how I would cope without my partners help and understanding and a little kick in the pants when I need it. lol
There is another school of thought about men spouses of women with these diseases. Men want to "fix" things and when they can't, they don't know how to act. When you suddenly go into a flare after a time of good health, he gets scared. Yes, he acts like a fool, and you are terribly hurt. I think going to the doctor with you is a good first step. Make sure the doctor knows in advance why he is there and can take the time to explain things to him. You might also print off a lot of information from the web and leave it around the house for him to read. (Don't tell him to read it though). See if there is a good time to have a chat with him and quietly explain that you think he is wonderful and really appreciate his helping when you are in pain. A line of communication is essential so you are both on the same page.
There is another school of thought about men spouses of women with these diseases. Men want to "fix" things and when they can't, they don't know how to act. When you suddenly go into a flare after a time of good health, he gets scared. Yes, he acts like a fool, and you are terribly hurt. I think going to the doctor with you is a good first step. Make sure the doctor knows in advance why he is there and can take the time to explain things to him. You might also print off a lot of information from the web and leave it around the house for him to read. (Don't tell him to read it though). See if there is a good time to have a chat with him and quietly explain that you think he is wonderful and really appreciate his helping when you are in pain. A line of communication is essential so you are both on the same page.