My Rare Disease Story
Any of us who have lived with a rare condition for several years have had many chapters in their journey. As my life with a rare disease has progressed, my story has changed many times. Finally, my rare disease story has brought me here, to a time where I am finding equilibrium.
Like many of us, I have learned to adapt. That is how we all live, not just those with a rare disease or a chronic illness. None of us stay the same. When I think of my life with a rare disease, when I think of my rare disease story, I think of my story as a book. Each section of my book has chapters that tell the story of that time in my rare disease.
Now is the time in my rare disease journey where I work on Medical Maintenance, Mental Maintenance, Lifestyle, and Relationships. This is where I have found a way to build a life intertwined with my rare disease instead of making my life about my rare disease. Life is full of change so, I have written the chapters of my rare disease in a mental draft. The current chapter of my rare disease story is equilibrium. Living with a rare disease is possible.
I often write about chronic illness. When I do, I try as often as I can to say “living with Ehler’s Danlos Syndrome” not “suffering from Ehler’s Danlos Syndrome”. (or your disease)
Don’t be fooled; this was not an easy place to get to, and it does not mean that I do not hurt or live with my symptoms. I have found a way to manage my disease and not let it manage me but it required hard work and perseverance. There are times that I return to previous chapters to add new sentences. I am always learning. Times when exhausting and unbearable pain returns and my doctors work as a team to try something new.
Building A Life: Trial, And Error
The four parts of building a life with a rare disease, as I have identified them so far are:
Once I found the right doctors, they were my forever doctors. I drive 100 miles round trip to see my pain management doctor, my general practitioner, my therapist, and my rheumatologist. I also pay an annual fee above and beyond my insurance to see a specific kind of general practitioner and receive exceptional care from her.
My therapist helps me deal with the issues that come from living with a rare disease. Because I have been living with my disease for several years, my issues revolve around how I relate to others and manage my time as well as irregular issues that come up. She has helped me with more issues than there are of many popular magazines.
I know my limits. Knowing your limits makes life easier. Knowing what I can and most importantly what I cannot do allows me to set up a routine, and I do not deviate from my routine. Yes, some of these things cost money, and that requires budgeting. I had to find out what was the most important to me and how to make it work. Equilibrium is also about prioritizing. I like to cook but my meds cause me to forget things all of the time. I often forget to buy important ingredients at the store, or I just don’t feel like going out one day. I signed up for “Blue Apron” to minimize the amount of planning and shopping I have to do. BOOM!
As it turns out, for three meals, this is cheaper than getting take-out a couple of times a week and eating out an additional night plus I get to cook creative, healthy meals alongside my husband. We have a great time and the food is good. This has helped manage my lifestyle issues, kept us eating healthy, and helped with the next topic: relationships.
OH, and speaking of meds, I use PillPack to organize my medications. That saves me time and I don’t forget to take my medications, which can be a problem.
(I am not paid by either of these companies, I just like them.)
Relationships have been my most complicated management issue. I have had problems with family members who did not understand what was happening to me. Chronic illness of any kind can destroy relationships; a rare disease is really hard on a marriage. The divorce rate for couples where one of the two is chronically ill is sky-high.
The bond with children or parents is eroded as the illness becomes the focus of the patient (even with adult children and the parents of an adult rare disease patient). Why? Well, when I first got sick it was something I became absorbed in. I was trying to educate myself, looking for support groups and treatments, trying new meds that were exhausting me, making me forgetful, changing my mind and body. I will own that.
For my family, it is hard to watch that and hard wrap one’s head around the concept that there is not a single thing that a doctor can do to fix this. I think it is hard for our loved ones to see us, often looking well and absorbing that we are sick. They are watching us become someone new someone and different. I think they are waiting for the “old” us to come back.
I found that bringing my husband with me to a physician’s appointment and to therapy helped. One important point that I have had to make several times is this, “Do not compare me to the Julianna that is gone. She is not coming back.”
I have learned to say, “I just cannot do it today” if there is something I cannot manage. I am no longer afraid that someone is going to get mad at me.
Using The Tools
All I have to do is juggle all of these parts in this chapter of my life. I look at all of the work I have done as tools in a toolbox helping me keep my equilibrium. I keep it close at hand, and in that toolbox, I carry everything I need to keep that equilibrium I have worked hard to create. It may seem like too much work for one person to handle, and you are right, it is.
But, remember, I am not alone.
Now, how can I help you with your rare disease story?