This PFAM carnival is hosted by FibroDAZE, and her prompt is –” when you have made some sort of peace and are coping with the chronic illnesses you do have and “life” throws you curve balls in the form of a new diagnosis, how do you deal? What are your coping mechanisms? How do you come to terms with the new diagnosis?”
Well, this is a doozy of a topic isn’t it?
How many of us have been diagnosed with something chronic, only to have another chronic illness added on to it, then another..then another….??? (I have a whole list, just look at the Page titled My Ants that Bite.)
This has happened so many times to me now I’m usually relieved to be given a name to something I knew was there. When I got the Meniere’s diagnosis, it was scary, but it was almost liberating. I felt validated. No longer was I dealing with just a bunch of symptoms, it had a name. (I have a few friends who have an illness with no diagnosis. This is much harder to deal with, I think, than those of us who have a diagnosis (or many diagnoses).
I had a new diagnosis added on to my list in March, I also went through a 5 month spell of having a reprieve from one of my most debilitating illnesses only to have a relapse about 5 months ago. How have I handled this?
Truthfully, I cried, I bitched, I was devastated, I collapsed in my husbands arms, then I took a deep breath, pulled myself together and reached out.
I dove into my blog and called on my friends here who have been with me through the ups and downs, I gathered them around me like a nice warm quilt and I let it all out. They listened, and supported me. They offered advice when asked, comfort when needed, and a swift kick in the butt when I was wallowing too much. : ) I’ve been very lucky here to find such a supportive group of people who really “get it”.
I am a strong believer is knowing everything I can about what is going on with my body, so I research, and I find more people who have experience with this and compare notes. I take what I think will help me, and leave the rest. (this is tricky, but there are so many people out there trying to take advantage of desperate people with chronic illnesses, we have to be careful.)
I also see a therapist who specializes in helping people deal with chronic or debilitating illnesses. My husband and I see her together, this has helped us so much, I just can’t begin to say how valuable this has been to us.
- Digest: First take time to absorb the information, don’t let it overwhelm you.
- Think: How is this going to change my life? Can knowing about this make it better? (my new diagnosis in March was Fructose Malabsorption, by changing my diet, I am able to make things better.)
- Seek: Look for others who have similar issues and compare notes, learn from others who have been dealing with this for a longer time. Look for as much information on the subject that you can. The more you know the more prepared you will be to handle what comes your way.
- Build: A strong support system to help you with this new challenge.
- Re-evaluate: Is your life going to change? What will this mean? Do I need to make a different plan for dealing with things? Will my diet change? will my ability to do things change? ….
- Make a plan: This may take a while, depending on what your new diagnosis is, or in my case how severe my relapse is, a plan is needed so we won’t feel out of control. Again, reach out and ask other’s how they handle certain situations.
- Support: I know I mentioned this before, but I believe this is one of the most crucial aspects of dealing with a chronic illness. We need support. Do not hesitate to get professional support when needed.
- If needed, get a second opinion.
After a long battle with myself, fighting every diagnosis, refusing to believe I couldn’t just be fixed, I realized that my life wasn’t going to turn out like I planned. Things would have to change, and I needed to let go of some of those old expectations. No, my life isn’t what I expected, so I’m changing my expectations. This is a fairly new idea for me, but one I’m clinging to and repeat often. Not what I expected? Expect something else!
Now if things come up it’s much easier for me to change accordingly. This was not an easy thing to do, and I still get stuck, and have set backs and pity parties…but it’s easier than it used to be.
Every day I try to say something I’m grateful for in my life. Some days I say the same thing as I did the day before and the day before…perhaps I can only think of that one thing, or that one thing is very special at that moment, but I can always think of at least one thing.
Lastly, always remember, you are not defined by your illnesses!
7 thoughts on “How to deal with one more thing? PFAM blog carnival”
Wonderful! I think you summed it up for a lot of us. Yes, we stick together, thank goodness for this great group of supportive friends. I have been taken advantage of in the past, trying to relearn that lesson every day. By the way, I think we say some of the same things in our posts!! How’s that for friendship? Laurie aka hibernationnow.wordpress.com
oh Laurie, I haven’t read many posts the past few days, I hope I haven’t repeated you too much. : )
glad we are on the same wave length.
Yes, I have been burned quite a bit, but I’m trying hard to not let that ruin my ability to trust others.
hugs to you!
I know you like them.
I can relate to a lot of what you wrote about and I especially appreciated your reminder that I am not defined by my illness. . .
I’m glad you could relate to some of what I wrote.
I had to tell myself that a lot, and finally I believe it…my illness is a part of me, but I am not my illness!!
good luck to you.
I think the hardest part for me was that I couldn’t fix it and accepting that my life was never going to be the same. I went through a period of depression and going to a counselor helped a lot. Once I adjusted to that little shift–gratitude has been the biggest factor for me. I totally agree with you on thinking every day about what you are grateful for. Appreciating the little things. Knowing that if you are having a really bad day, maybe tomorrow will be better…or the next day.
This was a really well thought out post. Good advice. Thanks for sharing. 🙂
This is a great post with wonderful advice. If you decide to add another page (like the About Me page) to list some of your posts you think people should read, this should definitely be one of them.
Sorry I haven’t been around much. I kept working on the posts for NHBPM so that I could always have a few always scheduled in case I got sick. I wanted to be able to say that I did a challenge. But, they’re all done so I can get back to reading my favourite blogs.
And, you’ve made some changes? I like what you’ve done to the place. (Now it’s my turn to ask: I’m not imagining things, am I?)
Maureen, First, thanks for the complement. That’s a good idea about having a page of My Favorite Posts, it may take me a bit of time to put them together….but it could be cool.
No you aren’t imagining things….there have been changes. Not sure if I’m 100% crazy about it, so there could be another change soon. : ) w