Writing a letter to the person who saved your life

Note: This is the letter I sent to the therapist that treated me in 2001. I had not contacted her in 12 years. How do you find words to thank a person for saving your life?

Dawn,

I hope that this email finds you.  I sent you a linkedin request with as much of a note as the site allows.  I’m sure that what I said wouldn’t have been enough to jar your memory – and the photo of me doesn’t really look like me.  Even if the photo did look like me, I realize that you have touched so many lives that it is probably hard to remember them all!

I came to the treatment center in 2001.  I was abusing prescription pain medications during a long illness.  I had a shunt placed in my head to relieve the pressure on my brain.  I had been sick for about 18 months, and had basically lost the will to live.  I didn’t know how to find myself, or define myself outside of my illness.  You taught me how to think of myself as a well person again.

I was very co-dependant with my Mother, who also abused prescription pain medicine.  I grew up in a really dysfunctional household, where I was the caretaker for the adults and my little brother.  You showed me that this wasn’t normal and that it would be ok if I got angry about the childhood I had lost and the abuse I endured.  So, with you, I got angry for the first time in my life.  It was overwhelming and I was scared that I couldn’t contain all of my anger and misery if I acknowledged it.  You proved to me that I could.

At the age of 25, while at the facility, I felt empathy for the first time in my life.  This sounds dramatic, but with everything I had going on at home growing up I never really learned how to care about other people – only the people I had to take care of.  I’m not sure how this happened exactly, but I found myself crying for someone else’s pain at an AA meeting.  This liberated my soul in ways I didn’t even comprehend at the time.

You were the first person in my life that believed in me SO much that you made me think that all of these things were possible.  I am certain that without the help I got under your care I wouldn’t be here today.  That’s not hard for me to be sure about either, because my Mom did finally die of an overdose four years after I left treatment. I did everything I could to help my Mother, but the only thing I could do in the end was to let her feel the pain she was creating.  It didn’t work, but thanks to you I know I was doing the right thing and I don’t suffer guilt about trying to save her life even though I wasn’t successful.

You also wanted me to go to OA meetings, and I’ll admit that I was pretty angry about that at the time.  I weighed probably 250 lbs or so when I was an inpatient there, but I couldn’t accept that food could be a drug or an addiction.  I weigh 120 lbs now, and I do finally understand the point you were trying to get across to me back then.  It took a while, but I finally got it!

This email is to make me feel better if I’m honest.  You have given me more than anyone in my life (except my husband who has now been with me for 10 years).  YOU are a big part of the reason I was able to find a wonderful man to love me.  I was taught at RI, healthy people don’t fall in love with sick people. Thank you for making me healthy enough to find a person who loves me exactly as I am.

I want you to know that despite continuing medical issues, I am very happy with my life.  I was recently diagnosed with Ehlers Danlos Syndrome (a genetic disorder from birth, which was what was wrong with me all along medically).  I am still coming to terms with finding out that I have had this genetic disorder for my entire life, but I’m confident that with what I learned from you I won’t be consumed by it.

I attached a photo of me with my Mother, Grandmother and Husband.  That photo was taken the last time I saw my Mom coherent enough to have a conversation, and still alive.  You may actually recognize me in this older picture.  I’m proud of what my life has become, and I am happy to be a normal weight person.  I hope you are proud of me too!

The Last Supper

I feel like a complete person, finally, and I am learning to love myself more every day.  I owe a debt I can’t repay to you, but I’m doing my best to pay it forward in all the ways that I can.

Thank you for saving my life.  Even though I forgot your last name, you never left my heart.  My grandmother almost died this past weekend, and I was getting things out of her attic.  I found all the letters I wrote my Mom while in treatment, and the materials that you sent her.  I was finally able to find you!
Reverse Namaskar

EDS Patient’s Bill of Rights

Reverse Namaskar

Reverse Namaskar

The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my EDS was undiagnosed. My experiences don’t seem to be unique. Many members of the support groups I participate in have had talked about similar experiences with new doctors. Because of these issues, I have a very hard time trusting doctors. This is common in patients with Ehlers Danlos Syndrome. The sole purpose of this Bill of Rights is to ensure that my needs are communicated up front, and to discuss them with you so that we can build a great doctor-patient relationship.

1. I have a right to be treated by medical professionals that believe that Ehlers Danlos Syndrome exists. It is hard to believe that there are still people in the medical community that don’t even think hypermobility causes problems and chronic pain. My hypermobility is not benign, and my symptoms are NOT limited to my joints – because collagen is not limited to my joints either.

2. I have a right to be treated by medical professionals that believe that I have Ehlers Danlos Syndrome. This is a rare condition, but invalidating my diagnosis on the first visit means that we can never have a good relationship. I’ve struggled fifteen years to find an accurate diagnosis, and I won’t be treated by someone who thinks my diagnosis is wrong on the first visit.

3. I have a right to be treated by medical professionals who are willing to continue their education to provide support and treatment that is appropriate for my specific condition. EDS is such an unusual set of disorders, the cookie cutter approach to treatment will not work for me. I have tried so many treatments before arriving here that it’s very unlikely that any solution for me will be simple, and as a doctor you must be willing to think outside the box.

4. I have a right to be treated by medical professionals who believe in my complaints. As a patient with undiagnosed EDS, I was often questioned extensively about my symptoms and then accused of being a hypochondriac or malingerer. You must believe that I don’t want to be sick either, and that my symptoms are real. I need to trust you, and a huge part of that is knowing that the trust is mutual and that you believe in my will to improve.

5. I have a right to be treated by medical professionals that do not solely focus on my psychiatric issues as being the source of my problems. EDS causes anxiety and depression, chronic pain causes anxiety and depression, POTS causes adrenaline rushes and tachycardia. It’s all very complicated, and there are psychiatric issues, but they are more symptoms of a bigger problem and should be treated as such. Don’t dismiss me as anxious or depressed without treating my other problems too.

6. I have a right to be treated by medical professionals who are able to admit they don’t have the answer to everything. In order to find new treatments and make progress, it is imperative that my medical team never gives up on searching for answers. Many EDS patients miss being diagnosed because their medical team labels the issue as fibromyalgia or chronic fatigue and then stops looking for new answers. Diagnosing EDS is likely just one piece of my medical puzzle, so it is important that the search for treatments and answers doesn’t end there.

7. I have a right to be treated by medical professionals who take my pain seriously and work to bring it under control. The link between unbroken pain cycles and psychiatric issues in the chronic pain patient isn’t debatable. I realize you are bound by laws and your oath, but EDS is very painful and often requires use of strong medication and other pallative interventions. If you don’t believe in the severity of my pain, if you don’t have the resources to treat my pain, if you think I am drug seeking, tell me so that I can find a doctor who is able to help me.

8.  I have a right to be treated by medical professionals who respect my intellect and knowledge about my disease.  Because EDS is a rare condition, we are much more informed about our medical issues than your average patient.  We live EDS every day, some of us research our conditions every day.  Unless you are putting in the same number of hours researching my issues, please don’t dismiss me when I come to you with a specific concern.  I am open to being wrong (and if it’s a bad thing I *want* to be wrong).  Please explain to me why I am wrong though, so that I don’t need to worry.  My disease has made me capable of understanding things that your other patients might not understand.

I know that YOU were not one of the doctors who let me down. I’m not blaming you! My case is complicated, and I definitely don’t expect you to have all the answers. I realize that I am the sort of patient that can scare a doctor because you can never make me well again. But, if you are willing, I will do my very best to start our relationship with a clean slate, even though I’m scared. If you give me a chance, I promise I will give you one too. You might not be able to cure me, but together we can make me better than I am today – and I really need your help!