To the Newly Diagnosed...

I recently heard of someone who was diagnosed with Endometriosis and although I have not met her, I felt a strong desire to offer encouragement. She will be bombarded with information and advice and quick-fix ideas and those early days of diagnosis can be frightening and overwhelming. So, as someone who has lived with this disease for over 20 years now,  I put a few thoughts down that may encourage her if I get to meet her. Perhaps this will mean something to you as well, even if Endo is not part of your story.

1. This is your story. A disease can be common amongst many of us, but each person's symptoms, choices of treatment and response to treatment is unique. Be open to other people's experiences but remember that yours will be unique and you need to choose what you are comfortable with and what matters the most to you. It is a day-by-day experience and it will take time to figure out the path you want to go down regarding treatment. Take your time. Be gentle with yourself. Although it is shocking and difficult to have a new diagnosis, when the dust settles a little, it can be a good opportunity to choose some priorities and direction for your life that you may not have thought of yet. Some of the most content people I know live with some kind of 'limitation' that has forced them to make life choices and their focus and intentional way of living seems to bring about a contentment and gratefulness that others don't seem to have. So, as you absorb the news and process what it means, remember that there is a bright side to this too and if you can't see it yet, that's okay.

2. Pace your information seeking. There is so much to learn about a new disease and it is tempting to try and absorb everything all at once. Well meaning people will try and offer you a vitamin or recipie or therapy that worked for them. (Even this blog entry is 'advice' that you can take or leave.) To try all the ideas will consume all of your time and energy. You'll need to discern how much energy you want to put into research. There is life to live today. There are people to love and be loved by today. Yes it is good to receive information . . . but remember to pace yourself and stay present in your daily life too.

3. Document your symptoms. Although it is tempting to assume that on a good day, maybe the disease is gone . . .  the reality is that it is a chronic condition and it is here to stay. {Sobering, yes, I know. I've had it now for 24 years.} Pain will come and go . . . and the good days are so good! But once I accepted that this was my challenge, my course to run, then I began to document symptoms and watch for patterns, cycles, ways that pain increased or decreased. This helped me feel a sense of control and empowerment as well as helped the doctors understand better how to offer treatment too. Then you can bring your list or chart to your doctor and spend less time explaining and focus more on pursuing relief or treatment. It is also a good way to guard your heart from becoming discouraged when pain comes back.

4. Choose your doctor. If you are able to, find a doctor or specialist who you feel safe and comfortable with. There is a long path ahead and the relationship you'll have with your doctor will be important. (After my third surgery, when pain was gone completely for about 5 months, I brought a big fruit basket to my doctor's office to thank him. He was grateful but also reminded me that the condition was chronic and pain could come back. I told him I knew that but I just wanted to celebrate the 5 pain-free months! He understood and accepted the gift. It was a good moment for me too.) Also, if he or she has a quick-fix approach to Endo, you may need to find someone else. Each time you come back to their office for help, you don't want to feel like you're making up the symptoms. A doctor who understands Endometriosis will understand the symptoms and be able to compassionately help you. No doctor will be perfect, but finding one who is compassionate and sees the disease in all its complexities will be helpful. 

3. Give yourself grace. A new diagnosis is a major shift in your life. (I remember hearing the word "chronic" from my doctor and couldn't believe that was my new reality.) So if you feel like curling up on the couch and watching a movie instead of going out with friends, give yourself the grace to do that. Something has shifted in your life and it is yours to process. You don't have to do it alone, but you are the one who understands what is going on in your heart and mind. . . so be attentive to that and allow yourself some time to process and take care of yourself. You don't have to be a pro at your disease, you don't have to know everything, or conquer it, you don't have to 'handle' it so as to not inconvenience others...be gentle with yourself and see this as a shift in direction...and give yourself time and space to think and process as you need to. 

4. Build a team. Don't try to do this alone. You're going to need a team around you. But be selective. (I went to an Endo support group once and after two hours of listening to everyone complain about their doctors, I thought that perhaps there was a better way to spend an evening.)  It's important to have a few friends that you can talk to about your symptoms etc...but don't exhaust yourself trying to explain it to everyone. Sometimes, people can treat your story with careless-ness and you don't need that. So try to limit your deep-heart-thoughts to a few friends who care for you. Some people will be excellent 'helpers' and want to work with their hands: clean your house, get groceries for you, walk your dog. . . let them! They'll feel great helping and you'll benefit big time! Others will be the kind to sit with you, have a coffee and let you talk. Let each person offer what they can and then you won't be tempted to lean too hard on one person for everything. Ask advice from health professionals and try new ideas as you want to. There are plenty of blogs and personal websites from others and there you may find real connection and encouragement too.

5. Creative communication. One of the most helpful things I've found is to choose words or phrases that help others understand what I'm going through. For instance, when pain starts to increase during the day, I don't really want to call attention to myself by saying "I've got pain right now!" but my family can usually tell something is going on anyway. They want to help but don't know what to do. So, some simple planning has worked out really well. My husband and I have worked out 'code' words that mean something that we both understand. If I say, "FP" it means, "fresh pain" and my husband knows that means that pain is high, I've got it handled, but I need space and probably won't laugh at his jokes for the next few hours. I say, "Hey hon, FP" and he says, "got it". No further explanation needed. He knows that it also means I would appreciate help with my tasks, and he'll quickly pitch in because he just knows and I don't have to ask. Or earlier on in my story when pain meant I had more serious things happening like internal cysts bursting, we learned that if I said, "hospital now!" my husband would pull the car up, not ask questions and just take me there. The stress of trying to explain what you need while in pain is really difficult. Or when the kids were little and I'd lay down for a nap because of pain, they'd poke their head in the door and look concerned, I give them a thumbs up and they knew I was okay. (When they were quite young, after a surgery, I made them a comic book that explained how my tummy needed to heal and so our daily routine would be different. I described all the ways we could play but that I couldn't pick them up or walk to the park with them. The comic helped them understand and they cooperated!) We can't expect others to know how we are feeling. It is our job to help them understand but we can make our job easier by thinking through a creative communication plan ahead of time. 

With respect to not overwhelming the overwhelmed, I'll stop here. :)