The Invisible Disease
I was diagnosed this last February with RA. I'm 48 years old. I've told my closest family and friends, but they tend to forget. I am the matriarch of the family, always cooking the holiday dinners, making the plans, decorating, cleaning... I had a 5 day flare after Thanksgiving. I told my mom, but 2 hours later she invited me to lunch with her and my daughters, as if I could just get up and go. I have most of my pain in my feet, which makes it hard to walk. When my husband and I go to the store together, he walks so far ahead and forgets that I'm there. I've quit going to the stores as much, and I'm about ready to quit hosting everything. It causes more stress than enjoyment anymore. I just wish they could understand and provide more help, but because I don't look sick, I must not be sick. It's the same for me at work. If I miss days, I'm treated as if I'm just out running around having a jolly fun time skipping work and I literally get yelled at. I don't know how to get people to understand how painful it is and how life changing it can be. I can't do as much as I used to and that feels like a huge loss already. On top of that I have to worry about the loss of friends, family, and possibly my job. Has anyone else struggled with this after being diagnosed?
I think most of us have in one way or another. It depends I think on the person, type of work and family situations. I found that my immediate family and work were generally supportive. But my extended family did not understand and were critical. I wish there were good universal answers. There are not.
But I did come to a point were i made answers up for my own amusement. For instance why did you cancel? I found the yellow brick road and was on my way to see the wizard. You say you are ill but you look fine. Yes, I have an internal infection that is eating my eyes. It is a virus and people I look at can catch it if not vaccinated.
I found the more outrageous the better. Give me half a step and I took 40. next time someone gives you a hassle, think what would rick say? Then laugh. It will freak them out. Use this power wisely. Or maybe even use it unwisely.
In all seriousness what your describe is common. We have to come to a point where we know that if they understood they would not criticize. Take care of yourself first and I so hope things get better soon.I love that, thank you!
Hi,
you said that very well and all so so true.
Had RA coming up six years now ..had it all good ,bad and the ugly lots of ugly..
At the moment about to tackle another drug and here so we go again.
I think maybe if they had called it RA Cancer Joint Arthritis people might try and understand more..not sure.
We can all only hope to get on that remission train…even just for awhile.
What you said about work is a classic…so true.
As hard as it can be sometimes we have to try to positive and do what you can do , not what you can’t …easy enough to say ..I know.
Find something you love to do , even if it’s only something small and when you feel a bit better tackle something else…find that smile.
All the best.
, I really can't expand on what Rick shared because he pretty much covered it all! But, as a Mom myself, I know how hard it is for people to see us as something other than "Mom" or "The Holiday Hostess" or the "Calendar Keeper" or whatever it may be. Our loved ones can often forget we are so much more than our titles. And it doesn't help that many RA symptoms can be invisible to those not experiencing them.
You can always share articles from here or other RA communities with your family to help them understand what you are going through. I don't know if it will help, but it might.
I wish I could offer you a great suggestion for helping your family understand, but please know that at least here, you will never have to explain yourself. This community understands the challenges of living with RA. Come here any time you need a little extra support and understanding.
Gentles Hugs,
Erin, Team Member.
. On top of the excellent thoughts and information already shared, I want to note that, in relation to your job, RA does come under the Americans with Disabilities Act (see: https://www.hss.edu/conditions_overview-americans-with-disabilities-act-ada.asp). I realize that every workplace situation is unique and how this plays out in the real world can be tricky, but know that you do have workplace rights (see also: https://www.arthritis.org/health-wellness/healthy-living/daily-living/work-life-balance/workplace-rights-disability).
When it comes to friends and family, as others have noted, it can be ... well difficult. Often it just takes time and, hopefully, this will be the case with those in your life. I do want to share with you this article from our contributor Lynn Marie that lays out what life with RA is like for friends and family: https://rheumatoidarthritis.net/living/disease-explanation. I don't know if the people around you are the type you can get to take a look at something like this, but it might be worth a try and those who do are those you can probably count on. Wishing you the best and please know that this community is here for you. Richard (RheumatoidArthritis.net Team)this is really great information, thank you!
