From the time I got my diagnosis, I spent several years trying to get things in order for my demise. I think that this is natural. You had quite a scare and so did I. You might say I was quite a bit older, but I had a lot to live for and so do you. You have a whole life to live! I agree 100% with the no sunbathing and you will too if you ever try! But still get out! Use your sunscreen, wear clothing that lets in less sun, wear cute hats that shade your face. As for long hikes, give it some time. I bet that will come again for you. In the meanwhile, take short ones and keep your exercise up as much as you can.
In my case, I got things in order and decided to live as much as I could while still taking care of myself. I have had this disease a long time, in and out of remission. I think I have had this since I was about 15 months old and I am now 64. I was diagnosed 12 years ago and stay too busy, but I am now content and last Dr visit was back in remission. I think that is no longer true, but I dont worry about it. I do miss my beach trips. Sun makes me feel awful.... rashy, itchy, nauseated, headache, and exaustion. Last time I went, I walked on the beach in long rip stop pants and a short sleeved shirt, with sunscreen and a hat. Did not even get in the ocean. I did swim in the pool late in the day. I suggest that you might look into a counselor who specializes in those with chronic diseases, but just having someone help with your depression would also be helpful. Use meds if the talk therapy doesnt help. Keep on coming to see us. We all need you too!
Mary Ann

Thank you so very much Marry Ann.
You have given me new light to my situation.
I truly appreciate it.

Hi, Aeilanikai, really sorry you are having that reaction, and I don't think it's uncommon. I recently spoke with an old college friend-- we are very close but only talk a few times a year-- and he reminded me, "When you were a sophmore in college, you didn't think you'd live past 45." And I said, "Wait a minute, I thought I said 65." And he said, "No, I remember distinctly, you said 45."

Weirdly, I was not that scared of death-- but if you were drinking as much as I was, you wouldn't have been scared of anything, either! I do not recommend this technique, as my unhealthy lifestyle could have killed me faster than MCTD!

Agree with MT, keep coming back-- also read ahead and note the new research another member posted about MCTD. It's looking like 15-year survival rates are more like 85% and remission tends to be stable, prognosis generally better than Lupus or RA, and MCTD conversion to Lupus or RA is more rare than anticipated.

Keeping one eye on the research and the other on anecdotal reports, it seems like many of here have reported that this illness comes on hard, often at adolescence or childhood, and then backs off-- not always, but for many people-- in your late 20s to mid 30s. Then it makes trouble again in your late 40s and 50s for a while, and then quiets down.

We have some members who have had very, very serious symptoms flare up, expect the illness to spiral out of control, and then... they either stabilize or improve.

The weird thing I am running into: Now that I am 60, and life is good, I fear death much more than I used to, because I have more to lose. Is that weird, or what?

Hang in there, and as MT suggested, please check back in and let us know how you are doing!

Thank you so much!!!
This really does help, and make me fee a lot better.
I was freaking out, and now feel more accepting of it.