Things I am learning from these posts about this illlness

A couple of things I am learning about the illness from reading the posts on this site are below. Please correct me if I am wrong on any of these:

  • You can be in the early stages of the disease and still have a lot of pain. Early doesn’t equate to mild or nothing to worry about, or it is all in your head.

  • This illness can have flare ups and have partial or total remission periods. I can see where it would be easy for someone to go into denial and take oneself off the medications or convince oneself that he or she didn’t really have this illness in times when things are feeling good.

  • Poor sleep can be part of this.

  • Depression can be part of this, even in early stages of the illness due to many factors: the chemistry changes, fatigue, and even the grief of realizing that you will never be the same as before you had this.

  • If you have seen one person with PsA, you have seen one person with PsA, it can be different in different people (i.e. I don’t remember ever having had sausage fingers or toes).

  • Because there is not a single test that says “yes you have this for sure”, it can be overlooked, misdiagnosed, and those that have it may remain in doubt wondering if something else is going on.

  • Medications can be scary and have side effects but not nearly as severe as taking the risks of having an untreated illness - this illness is often if not always (untreated) progressive, it is incurable (but treatable) and it is an invisible illness prone to discrimination just like other non-visible conditions.

  • Asking for help can be very valuable - there is plenty of support here. Sometimes those who are doing great on medications may not be likely to post here, so the posts may be biased towards those of us who are either newly diagnosed or those who have struggles, or those who have learned the importance of support and understanding from others who have this illness.

This is a very good post. Thank you, unfortunately I can relate to it all.

Excellent! You pointed out that it the group may be biased towards those who are having struggles. Yes, but there are enough people on the site who are stable or relatively so, that it may not be that bad. Thanks for the great overview.

Oh yes! All true. You are smart, but I’m still not convinced you’re weird. LOL. Teasing, of course…

You are so right about being overlooked and misdiagnosed. My symptoms were overlooked, misdiagnosed and written off to other garden-variety causes for twenty years. During that time, in my heart, I often felt something else was going on, but I took the view that “if the doc isn’t worried, I’m not going to be either”. My prize for taking that approach has been three joint replacements. Only recently, after much pain and angst, I’ve got a diagnosis, assessment and treatment that is congruent with my gut feeling. I am doing well (I think), and now I will probably – unintentionally – fade into the group of members that’s doing quite all right.

So, I would add to what you said: if, in your heart of hearts, you feel that something’s not right, insist on a second opinion, or even a third. Don’t accept the word of one doctor. If that one doctor is wrong, you will pay the price. They will move on to the patient in the next room.