I remember how it felt sitting in the doctors office after my first surgery as my doctor explained my newly discovered diagnosis of endometriosis. I was a scared 22 year old and I had no idea what to do next. No one in my family had chronic illness much less endometriosis so it was definitely a shock. I sat in an empty music classroom after school (I was in the middle of my student teaching semester) and pulled up Google and began reading anything I could get my hands on as I tried to figure out what my new normal would look like. Thankfully I discovered an online support group for young women who had been diagnosed with endometriosis called GirlTalk with the Endo Research Center. The support, advice, and encouragement that these women provided was an essential part of my journey. I would later become the program director of this group and I can only hope that I was able to provide some support and encouragement to another young lady who was trying to understand her new diagnosis just as I had been encouraged and supported years before.
Nine years and four additional diagnoses later, I continue to be thankful for the awesomeness that is the online community both here at A New Kind of Normal and elsewhere on the inter webs so I wanted to share some bits of advice given by readers for those who are newly diagnosed with chronic illness:
Holly – Don’t expect to right all the wrongs (from the illness) in a week. Give yourself a break and work on your new life a day at a time.
Catherine – No one knows the pain you are feeling in, don’t expect understanding and don’t waste your time trying to explain it to people. What you are feeling is real, but it may not have an official name. Don’t ever give up or in but do what feels right for you, at that time. Illness changes and symptoms change so adapting is key. Sorry this is more than one thing!
Debbie – Have a good support person or friends. If you have that, then no matter how bad things may get, you will never be alone.
Kristin – As soon as you get used to a routine (meds , treatments and comfort or non comfort ) it will change. As quickly as you accept your disease , it will always throw u for a loop in one way or another. The best advice is the support of fellow “Disease’rs and a diary of symptoms due to u will forget….. Stay on top of it – document and take pics for proof.
Cheryl – Listen to your body. allow it the rest/sleep it needs. accept your limitiations…if writing out once check and cooking one meal is all you’ve got it you, then it’s all you’ve got.
Michelle – If you have a spouse drag them with you to appt, classes. Make sure they read articles and learn about what they can do to help you and what your limitations are. I didn’t and my spouse walked out after 20 years.
Kathleen – Do the best you can depending on how you feel for that day. Take one day at a time. Ask for help from your support person and tell them specifially what you need from them. They can’t read your mind. Probably the toughest thing is accepting help from someone and realizing you need it and can’t do for yourself. Keep a journal and a log of all doctors visits with any questions you think of prior to the visit and write the answers down. Also good to keep a running list of medications and dates of changes in doses and in that journal write about current symptoms while on what drugs as it will be helpful down the road. Have your spouse or someone go with you to doctors appointments in the early stages because you won’t remember half of what was said and two heads are better than one. If the doctor will allow it record the visit!
Renee – Acceptance is not defeat, but the key to understanding. Rest is not weakness, but the strength to know your limitations.
Angela – It is not your fault!
Karen – Respect your limitations and learn to live within them. In the long run you will have more times of feeling better.
Kim – There will be those who do not understand your illness. It is hard to understand something that they have never been through or that is invisable to them. Don’t let what others think, say, or do make you feel bad about your situation. Respect your limitations.
Sheena – Listen to your body it will tell you what it needs if other people dont understand thats there fault not yours as others have said respect your limitations
What piece of advice would you offer someone who is newly diagnosed with a chronic illness?
3 comments on “Advice for the Newly Diagnosed”
My advice, as someone who has ulcerative colitis, is that there will be good days and bad days. Be as upfront with your employer(s), friends, family and whoever else about what this may entail. Make sure they know what’s wrong. Don’t be ashamed to let people know – it’s the only way you’ll be able to function sometimes.
Be your own best advocate and have someone who can and will speak up on your behalf if you are too sick to do it. Doctors are human and don’t know your body as well as you do. Never be afraid to get a 2nd opinion.
I am with Angela above, “It’s not your fault.” I need to tell myself that a lot. But also: you will grieve. Learn about grief. Learn about grieving your heath. Be kind to yourself as you walk through the grief process. Because there will be good days, and there will be bad days. And the grief will cycle and stay with you the rest of your life. And that is normal.