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)Hello, I think I've RA all my life until it reared it's ugly head 2012 when I broke my left leg.
I've always itched to the point it bruises the area and it hurts.
I've found a product that takes the pain away and the itching goes away too comes. Aleve spray, it works better than the bio freeze. I go through 2+ cans a month. Aleve is worth the cost $15.00+ a can.
I'm a hiker, I can hiking 10 miles 3x's a week. I spray my joints with Aleve it defrost the stiffness. I believe staying active is the main way to fight RA, along with Aleve, hot baths and Epsom salt and a portable infrared lights with the sona and I also use ion footbaths. I also take the RA meds to help with inflammation and fighting the bacteria.
This regimen works, as long as I pay attention to the RA, I can stop the pain and it lasts 48 hours. In-between the sauna and ion footbaths at the same time. Once or twice a week just to maintain the pain and inflammation it depends on time. In-between the sauna, I take hot baths and ice packs after the bath. Never leave the Alive at home.
Dry skin I use diabetic lotions and Vaseline at night when it's really bad after the bath. Vaseline goes Into the skin and it feels good.
For the hands I use the hot wax machine for the hands. Like getting your nails done. Keep your hands in it till the wax starts to get too hot.
As far as friends and family they think I'm using the RA as excuse to get out of things. If it becomes an issue I walk off with my nose up in the air with the finger. So I don't do events, I do spend most of my time alone. It's easier and I don't hang. I stay away from people because I don't want their nasty germs or their Gossiping about for me having RA is a lie because I hike 30 miles a week. This is my therapy for the RA, the more we move the less the Flair's are for me but I'm exhausted when I get back. Hot bath then shower with cold water, It feels great. Nap time, I sleep better than night, the RA makes you have fatigue.
Don't let anyone discriminate against you because of RA. They don't live with it and personally they can 🖕off. They have no clue what we have to live with. Shame on them and I tell them so.
I take them off the friend and family list. We don't need the stress which activates the RA which I've literally been frozen because of stress. It's not worth the stress.
They don't live with RA we do. Every day is difficult for us to begin with much less having to hear, "You don't look sick"!! Which pisses me off.
God, I love to get dressed up in a ball gown and be beautiful just one more time. I can't because my whole body goes to itching and the pain is horrible. I used to get yelled at for taking the dress off and I'm on the way to the hospital because I look like I have been bitten by bees.
This is what we live with and no understands till they can see it. So I call them say, hey I'm stuck at home come over. When they do I'm asking them to do things for me, they usually do it without asking why aren't you doing these things. I ask for help to get help to stand up then lifting my legs cuz my knees are frozen. One less person that thinks I don't have RA.
These issues are no longer a problem.
Nobody has said anything and they are helpful. Just stand up to them. If you can't get them to hear you and really look at you. Hey buddy I'm in pain, leave me alone. It's a shame we have to get pissed for people to finally hear You.
Good Luck I've given you all a lot. This is how I fight RA.Hi
. Thanks for sharing what helps you and also how you deal with those who don't want to understand RA. Concerning the itching, have you found anything that makes a dent in it? There is a new Forum conversation on RA and itching here: https://rheumatoidarthritis.net/forums/does-ra-cause-itching. I also want to note that my wife, Kelly Mack (a contributor here), takes an allergy pill every day, per doctor's orders. I also want to note that many here understand the power of the nap. Our contributor Monica wrote this article simply titled "Embrace the Nap:" https://rheumatoidarthritis.net/living/nap-rest-benefits. Wishing you the best. Richard (Team Member)
