Monday, October 17, 2011

What No One Tells You About Living with a Chronic Illness

When you have been diagnosed with a chronic illness it can be scary.  One of the first things that many of us do is take to the 'net to find out as much as we can about living with our illness.  There are many, many (did I mention many?) message boards, twitter streams and blogs that are written by folks sharing their stories.  Some are coping so very well and share their strategies.  Others, not so much.  Unfortunately, the not-so-much contingency is MUCH larger than the positive stories.

I had an appointment with my Rheumy on Friday.  I got good news and so-so news.  The so-so news is that she can feel and see the progression in my knees and ankles- especially on the right side.  It was almost a joke. She was doing her exam and asked me where the problem areas were.  I told her that the up and down temps were playing havoc on my knees and ankles and when she felt the right knee and it popped she said "WOW- guess that's the spot!"  I said "I guess you felt that huh?"  She laughed and said "It's almost like I know what I am looking for!"  We had a good laugh but really, there is nothing that can be done so it was kind of like...whatever.  The good news (for me!) is that though I received a letter that the insurance company had taken my current med (Orencia) off their preferred meds list and it would cost me more- my insurance specialist at the rheumy's office called them while I was there and they did a test claim.  It came back the same as I have been paying.  I asked about the letter and they said that it went to everyone who was on that class of drugs.  They also told me that if I had been on Remicade- my co-pay would have gone from $50/3mos to $1300!  I literally almost spit my coffee out when they said that.  After that I met with my parents.  They were up in Louisville to run an errand and brought me a plant (Black Calla Lilies- I LOVE THEM!) because I haven't been feeling well and I told them what I had found out.  They asked me some great questions and that got me thinking about all of the things I wish someone had told me when I was diagnosed.  So, without further ado- here's my list:

  • 1.  You are not your illness.  Yes, you HAVE an illness- but it doesn't have to have you.  You are the same person that you were, you just have another challenge to deal with.

  • 2.  No matter what your symptoms, there are ways to combat them.  Personally, I can deal with a whole lot of pain but exhaustion is what I struggle with.  I have found that there are different ways to deal with both and most of the the time it is pretty successful.

  • 3.  There are people who can help with the details.  A prime example is the wonderful med-tech in my Rheumy's office who specializes in the insurance stuff.  She not only contacted my insurance and asked the right questions to get the answers I had been unable to get from them; she also makes sure that we are aware of and handles the paperwork for the different co-pay programs.  She told me who to contact to make sure that my specialty pharmacy was covered on the current program which will bring my co-pay down to $5.00.  It's a big relief!  

  • 4.  You CAN get past the guilt.  When I was first diagnosed, I spent a lot of time trying to figure out how I caused this illness that has no cure.  It didn't matter that no one knows what causes RA and Fibro.  I was sure it was my fault.  It wasn't.  It wasn't my fault, it wasn't my parent's fault (there is no proof that it's genetic), it was no one's fault.  Once I got past that, a weight was lifted.

  • 5.  It's okay to give yourself a break.  Stress is a killer.  For me, it can bring on a flare faster than anything else in my life.  I have learned that I don't have to be on the go 24/7.  I have learned that a little dust doesn't hurt, dishes can wait a little while and a nap is a good thing.  Anything that you can do (or not do) to let your body rest and rejuvenate is far better than trying to do it all and exacerbating your symptoms.  Your loved ones would much rather have you as healthy as possible than scrubbed floors.  

  • 6. An open mind is the best way to go into this.   It doesn't matter how many people that you know have the same illness- it is different. Your experience will not be exactly the same, your side effects will not be exactly the same, your response to the meds will not be the same, most importantly- your journey will not be the same.  While we (those who write about their illness) share our experiences and our coping strategies; what works for us will not always work for you and you may find that treatments that fail for us will feel like a miracle for you.  

  • 7- Your support system is KEY to dealing with your illness.  It doesn't have to be friends, it doesn't have to be family.  You can find support in many, many places.  If you find that there are people who do nothing but drag you down, do not count them in your support system.  I am not suggesting that you cut them off from your life (unless they are particularly toxic) but that you don't let yourself count on them and be disappointed.  It will only hurt.  

  • 8.  Blessings come from many directions if you let them. I found that people that I had always thought I could count on were just not able to support me, and people that has been in my periphery stepped up in amazing ways- am so thankful that I was open to that.  I found that I can be thankful for the changes that my illness demanded from my life.  I can be thankful for it opening my eyes to a new way of life.  I am thankful for a myriad of things that I have talked about here over the years.    

That's my list this morning.  I would love to hear from my fellow chronic friends what I missed on this list.  What do you wish YOU had been told when you were diagnosed.  Happy Monday folks!  


MissDazey said...

Good advice, well thought out. I have trouble with the #2 on the list. I seem to have several things I haven't figured out how to handle. But most I have, so life is OK.

Anonymous said...

One of my favorite neurologists long ago said, "Do what you can when you can and keep doing it." Even though my prognosis is "poor" I continue to consider myself an athlete and press on through pain, exhaustion and crappy days. The good days (even if they are further apart) are so much better when I manage the gas tank!


Lisa Emrich said...

Excellent list of suggestions which apply to anybody diagnosed with one of a chronic illnesses. Thank you for putting such thought into this and sharing it.


lorna said...

thanks for sharing ! i am glad you are here !
...going to share on FB ! ;-) Lorna

Jules said...

Thank you all so much for your comments!

Miss Dazey- you know that you are really an inspiration. I love your constant positivity.

I also like the advice from Anonymous's neurologist. It makes a lot of sense.