Delight to Despair: Dealing with Diagnosis
By Lynn Westfall @themodemlisa
Recently, my Dad reached out after a normal and expected long silence, and announced he had been diagnosed with a heart issue and would be having surgery. I wish I could say this was a calm conversation about how he had found out about the issue, but instead it was a rambling of desperation and extreme statements about dying. He barely provided any details about his health, diet and lifestyle and sort of dodged the question about a second opinion.
For those who don't already know my story (because I haven't shared it??): My Dad likely doesn't remember what my autoimmune condition is called (Hidradenitis Suppurativa, or H.S.) or what I have to live through on a daily basis because of it.
The Meaning of Diagnosis
This and other recent challenges had me thinking about what diagnosis means, how it differs from situation to situation, person to person, and based on time and location, etc. Being diagnosed with a lifelong health challenge is life-changing no matter what. If you had been challenged with strange symptoms for years and dismissed by doctors repeatedly, that moment when you finally have a name for the condition feels almost freeing. You're no longer an "enigma," as one ER doctor called me.
Having a diagnosis of something curable means that this chapter might be closed with treatment, and even the cases that can't be cured may at least have solid treatment options.
When Diagnosis Brings More Questions
When the diagnosis isn't simple, but instead a condition without known cause or cure and limited treatment options because of overall lack of knowledge, the situation can turn from delight to despair. You only have part of the answer, and more mysteries.
The onset of H.S. for me was at 14, in 1996, when my family doctor simply told me the first H.S stage one area I had found in my armpit was part of puberty, someone else in my family probably had it and it would probably go away as I got older. I trusted that he knew best, and he continued to see me as the condition progressed, but he never asked me about them.
As I turned 16, because of my recurring autoimmune issues, he rarely saw me and had pushed me off to a nurse practitioner. She was pleasant and always tried to reassure me things would get better. When I was 18, having a terrible flare-up in a very sensitive location, she told me, "You'll probably need to take Ibuprofen every day for the rest of your life."
I would go another 12 years hearing increasingly awful things from doctors including but not limited to: "Well if you just lost weight", "You are overweight after all" and "You aren't clean enough, you need to wash yourself more".
Finally, A Diagnosis
It was around the same time that information started popping up on the internet, which I had been searching the entire time, that a compassionate GYN confirmed the diagnosis of Hidradenitis Suppurativa. I had just gotten married and I was going back on birth control and had no idea how what would change now that I had a name for what I'd been battling almost half my life at the time.
Diagnosis still felt like a hallelujah moment for me. I remember coming home to my Mom and my new Husband and how different the reaction was as my Mom rejoiced and he just looked kind of puzzled. He hadn't been there for the agony, crying, days in bed and nights in the tub, but he would be. Because diagnosis did not mean healing for me, it meant more of a search for the root cause of the condition, which I'll save for my YouTube video on my journey.
Living with Diagnosis
Now 16 years after diagnosis and 28 years of having H.S., I may not be healed or even in remission yet, but I can still remember the frustration before knowing.
If you haven't found your diagnosis yet, it's easy to feel lost and hopeless, but you have to remain positive. The free medicines you can take for any condition are hope, peace, joy and love. That prescription took me all 42 years of life to find and it didn't come from a doctor, it turned out my Mom had been telling me since day one. Having a good attitude and an open mind go a long way to creating a sense of wellbeing even when we are challenged with discomfort. The gratitude section in the GRG Journal can support your attitude and help you stay hopeful!
Reacting to Others' Diagnoses
When my Dad told me about his diagnosis and went into crisis mode, I responded with love, peace, joy and optimism, but also with advice. He was not searching for an answer to a long-standing question, he was just not feeling optimal and the news was a shock to his system. Living without diagnosis for a long period changes this perspective to finding a surprise vs. having a bomb dropped on you.
Living with a chronic health condition can also change how you react to others getting diagnosed. This is also part of the diagnosis process: how others react to your diagnosis and how you react to others being diagnosed. Depending on what you're facing, loved ones may feel scared, confused, sad or even drop into caretaker mode when you haven't asked. It's important to give them space while respecting yourself.
The advice I offered him was a simple reference to a natural pathway to healing that I was intimate with (you'll have to check out my journey for the details) and asking if he had gotten a second opinion. I haven't gotten a response other than "I'll talk to you soon", but I'll update this post if I do!
A Personal Reminder
As a final reminder, earlier today, knowing I was going to write this article, I found a new symptom that I can't explain. It's uncomfortable, not painful, but not related to any of my existing issues. My brain immediately went into crisis mode trying to self-diagnose this new ailment! And even though I had a mild discomfort in that area for a few months, that I was barely noticing, now this was all I could feel.
The more I thought about it, the more it throbbed, reminding me of this new unknown challenger to my health. I immediately jumped on my phone and started scrolling through diseases looking for my new diagnosis and I couldn't seem to stop myself from crying. It pushed at me from the inside and forced its way out, I was thinking of all the worst-case scenarios and how this new thing would be what takes me out.
I have the experience to know that crying may not be preventable, but can be controllable with breath and focus. I brought myself back to a calm place within an hour and moved on with my day. Sharing this experience with you is for my own benefit, to remind me that I still have work to do, growing to do.
Conclusion
Diagnosis is a part of the overall process of living and growing with our symptoms. As symptoms come and go, it's important not to jump into crisis mode, or dive into the first diagnosis. Using a journal like the GRG Journal to track the events like diagnosis or new symptoms is not only to have a record to reflect on personally and with caretakers but it's also a way to help our own brains to come to terms with the new data we encounter. You can use the journal along the way to bring perspective to the new situation through reflection on past experiences. When I compare this new symptom to what I've already been through, I know I'll be just fine because I have survived so much!
I hope you'll share your journey with diagnosis in the comments below or on our social media pages @grgJournal & @GRGMINDBODY. Keep growing!