By Toby Speed. Originally Printed for  International Pemphigus Pemphigoid Foundation.

In the days after being told that you have one of the diseases in the Pemphigus/Pemphigoid family, when you’re running around filling prescriptions for your new, huge, seven-day pill container, it’s hard to feel hopeful.

Maybe you’ve been looking for answers for months – and getting the wrong ones. Maybe you’re finding it a challenge to take care of ordinary everyday things, like brushing your teeth because of painful oral lesions. Or you don’t know how to explain to friends that you’re miserable and not feeling up to your usual activities.

That’s how it was for me. By the time I was diagnosed with PV nearly three years ago, I’d consulted five different doctors over five months and had a medicine cabinet filled with failed ointments, pills and rinses.

Because my symptoms were so widespread, and because the doctors I saw were not familiar with Pemphigus, I’d been told I had everything from allergies to cold sores to possibly cancer.

It was weird hearing doctors, whom I instinctively trusted, tell me that this or that was going on with me, and turn out to be wrong, time after time. Each doctor focused on his or her special area of expertise, ignoring the symptoms that didn’t fit.

I remember calling one doctor to complain the medicine she’d prescribed wasn’t working, and she told me I was using it incorrectly.

Another doctor simply increased the dose of what he’d given me, and a third told me that if a certain cream didn’t work in two weeks, I should come back and be biopsied for cancer.

Frustrating!

Scary!

Finally I saw a doctor who said the magic words, “I don’t know what it is,” and referred me to a great dermatologist, who biopsied me and put a name to my condition. Under his care I began the slow uphill journey back to health.

For me, the hardest part was not the discomfort of eating or washing my hair or the harsh side effects from medications, unpleasant as they were. It was the sad sense that I’d lost something precious and my life would never be the same.

As I learned how to cope with PV over time I found out that, like other major life events, this experience offered a unique opportunity to grow and learn more about myself.

Some encouraging words, for those new to this journey:

1. You will feel better, a little at a time. Celebrate the small steps as your health improves each day, each week and each month.

2. Remember P/P is just a small part of who you are. While it may loom large right now, it will command less of your attention as time goes on.

3. Keep a health journal. I found it extremely helpful – especially in those foggy prednisone days when I got lost in the middle of sentences – to record everything health-related in a notebook.

I wrote down the details of every doctor visit, the questions I wanted to remember to ask, the answers I got, symptoms and feelings, medication doses and so on. I’ve now had my notebook for three years, and it’s so handy for keeping track of lab work, bone density scans and other treatments that occur at regular intervals.

Writing things down also keeps them from swirling endlessly around in your mind and is helpful when talking to your doctor.

4. De-stress any way you can. At the 2012 IPPF Patient Meeting in San Francisco, we learned about the chemicals released by stress that aggravate autoimmune disorders.

My favorite way to get rid of excess stress is by doing yoga. I also enjoy walking, and when I don’t have time for either of those, a few long, deep breaths do wonders.

5. Count on your friends at the IPPF. There’s a wealth of help at the IPPF. You can get one-on-one support from a trained Peer Health Coach, ask questions on the discussion forum or join the active email group.

Online resources, dial-in Town Hall meetings with IPPF’s doctor-researchers, and annual Patient Conferences are other options. I made the mistake of waiting too long before getting involved with this fantastic organization.

6. Give back. Share a tip that worked for you or just lend an ear to help someone else who’s newer to P/P than you. See #5 for places you can jump in.

1 thought on “How to Feel Good About Yourself After a Diagnosis”

  1. Janet Mills says:

    Great article, Toby! You are honest and hopeful. Thank you for sharing.

    A lot of what you wrote here is similar to my journey to my diagnosis of CADASIL. I was first told I had MS/Multiple Sclerosis, which was incorrect. I experienced a lot of fear and frustration until I received the correct diagnosis — then I experienced the fear and frustration of knowing what I have! Being able to put a name on something and find others with the same diagnosis is extremely helpful. There are so many in the rare disease community who do not have answers for their mysterious symptoms (or those of their children). The work of our various patient organizations and Global Genes is helping.

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