Keep learning and asking questions

[Izabella81]

Yesterday, I was at the doctors office . The waiting room was really crowded, and strangely filled with very young people ( in their 20’s). I found this very sad like all of a sudden this is more and more happening to young people but there were others older of course. Anyways, this one lady who seemed to be in her 40’s sat next to me and started asking me questions about my condition. How long have I been sick, how long have I been following up with this particular doctor... etc. This lady has really swollen hands on the verge of disfigurement, and from our conversation I gathered she’s been treated by doctors for years and years . However, a few things stuck out for me;

1. Her questions were really basic , like she had no clue whatsoever what RA is , what is does , how it can progress, what different meds there are and their side effects....

2. She seemed to be under the impression that once the symptoms ( swelling in her hands) went down its fine that one should stop taking their meds naturally, and not go back to see that doc anymore coz he did the job.

3. She was upset that the doctors treatments don’t seem to work( see point 2🤯🤯🤯) and that she is in a lot of pain and discomfort.

4. She seemed to be there because she heard this doctor has a great reputation, however she didn’t understand until I told her that RA and other such diseases have no cure. She thought this guy was finally going to give her the righ meds to make this go away once and for all.

After she spoke to me, and I made a few points clear to her, I think she got depressed . But I was just telling her the truth, there is no cure, only management ( life long) even if you reach remission it’s not guaranteed in the long term and you will likely be on meds forever. I know it’s horrible but someone had to tell her bluntly. Yes diet and life style change help greatly but even then people relapse.

I have no idea how she managed to stay for so many years oblivious. Is it that the doctors never truly explained anything to her or they might have and she is someone who just doesn’t listen and disbelieves everyone, or does she live under a rock?...

in any case , please keep asking questions and get to know your condition and accept it and go on with confidence that you are doing everything possible. We live in a day and age that we have access to more Info than we possibly need. All questions can be answered in minutes and there are forums and support groups such as this one that really make a difference. We are very lucky and we need to take advantage of everything we have.

[helixhelix]

I have met many people a bit like that... there was one women in the waiting room that I was chatting to at my last appointment. She won't accept these "toxic" drugs so is just using steroids...! She was in a dreadful condition but seemed completely unwilling to accept any change, and didn't believe I had the same disease as her.

I do think some people just don't want to listen and learn, and we are so used to the medical world being able to cure us of x or y in 7 days with a pill that there's little understanding of auto immune diseases.

[Izabella81 in reply to helixhelix]

I feel bad for these people. I mean I feel bad for all of us but I think it’s about quality of life more than anything else. I ha e this disease and I will have it for a very long time( hopefully). I’d rather have it under control and be able to enjoy my life and go about my business like anyone else rather than being sick and in agony.

Take care of yourself

[EmilieD in reply to Izabella81]

I love this sentence:

"I have this disease and I will have it for a very long time( hopefully)."

Very good thing to remember! With a chronic disease with no cure, it's a very good thing to have it for a long time!