As I sit here rounding out a belated Thanksgiving celebration with my husband’s family, I am reminded of the things about life with EDS that make holidays especially challenging–and these vary from person to person. For me this holiday, I am struggling with significant spinal pain that has me using evenings in hot baths and bed to get relief rather than around the table desperately trying to be interested in a board game I don’t understand.

             My Crew This Thanksgiving

For many of you, these pain limitations are shared. Maybe you have family members who think Thanksgiving is the ideal day to run a 5K and you rely on a mobility aid or simply cannot handle such distances. Maybe your family plays some sort of amateur football game with just enough tackling to dislocate your shoulder or knee, rendering you on the bench and refereeing instead of scoring a touchdown.

Then, there are food restrictions. These can be hard to understand for people who have always been able to eat what they want and exhausting as you try to explain MCAS for the 86th time that day–or just look longingly at someone else’s pie or dinner role.

Maybe you’re surrounded by people pregnant or with babies and you desperately want to be a parent but can’t–and while NEARLY every part of you is happy for them, there’s this tiny part of you wishing you were sharing that experience with them, nagging at you as you smile, your conscious mind begging you not to cry.

And, it would be wrong not to acknowledge our EDS friends who are unable to experience group gatherings due to the severity of their symptoms. It can feel even more isolating on these “special” days.

So, how do we deal with these things? (Because right now, this just sounds like a list of all the things I want to whine about.)

If it’s possible, find someone to be your support system as an individual away from the crowd, who will check in with you with the empathy needed. My husband takes time to check in periodically and also knows the signs of my symptoms flaring without me needing to voice them. He will do what he can to get me to mitigate them when I tend to downplay them in an effort not to take away from a gathering.

Prepare how to handle conversations and decide where your boundaries are. If you are comfortable explaining things, you may want to practice how you will do so. If you don’t want to explain them, remember that you don’t actually have to. Outside those determining your treatment plan, no explanation is necessary. You may find it helpful to prepare how to best draw those boundaries.

If there is a chance you will hit your limit before the natural conclusion of an event, forgive yourself for that and allow yourself the freedom to leave. You owe your mind and body peace far more than you owe a group of people socializing or more time eating. Those who love you and know you best know you are doing what is necessary.

Finally, remember you are uniquely you and just because another EDS patient was able to do more than you does not make you less than them. This Thanksgiving, I’m thankful for all of you, all you show me every day, and surviving another year in this body.

I recently heard a young person (I know; it’s crazy when we stop fitting in this category) use the phrase “doing the most” to describe a person going over the top–and they didn’t mean it in a good way. It’s a little funny when you think about it, though–“doing the most” should really be a good thing. However, I think as EDS and HSD patients, we treat ourselves much the same way when it comes to self-advocacy with doctors and it probably starts with the fact that so many medical professionals treat us exactly the same way. Here’s what I mean–when we push for answers and help by, in a literal sense doing the most, we are seen as pushy hypochondriacs or people who have done a few too many Google searches, maybe people who have self-diagnosed, maybe people whose tests up to now look “normal” and therefore nothing is wrong except what’s in our heads, we judge ourselves just like those young people. We see ourselves with that same negative connotation. The self-degradation sets in like POTS in summer weather with no Gatorade.

Over time, this degradation contributes to medical trauma (medical trauma ultimately the responsibility of a system in which so much advocacy should not be necessary but that’s another topic for another day). It drives us to stop seeking answers and advocating. It pushes us to isolate and over time, we may even begin to believe we are crazy. I heard once the average time of diagnosis from onset of symptoms for an EDS patient was over 22 years (I can’t cite a source here and this has likely changed; don’t come for me). When you think about what 22 years looks like–if that period of time were a human being, they could graduate college. That is a college graduate worth of years feeling crazy and begging for answers from any number of medical professionals who make you feel even more like a crazy person. AND, that’s only on average. Imagine you are the outlier. You are the person who is in your 50’s at time of diagnosis having spend decades collecting traumatic experiences like I collect Taylor Swift merchandise. Trauma doesn’t just change the mind. Trauma changes the body. Society fails to see medical trauma as real trauma so often and we deserve better.

I suppose I have begun to ramble yet again and missed the point entirely, so I’m going to attempt to do something helpful rather than continue down a negative path.  I was fortunate to be surrounded by people who made sure I didn’t stop pushing no matter how discouraged I got. They didn’t let me give up even when I was told for the 857th time if I lost weight I would feel better, even when that turned into an eating disorder and I still didn’t feel any better, even when another orthopedic doctor told me they couldn’t explain why surgeries either needed to be done or had failed. In this way, I learned quickly how to “do the most.” What that meant was when one doctor didn’t have an answer, they weren’t the right doctor–not that nothing was wrong. What that meant was when a doctor spoke to me in a way that had me sobbing in the car on the way home, we called and filed a complaint with the system, even if all that did was put some note in some file somewhere. What that meant was making a list before every appointment of what needed to be done and if it didn’t happen, we moved on. What that meant was making sure when I was ready to give up, nobody else around me was.

In reality, I’m not that good at this myself. I’m a “do as I say” person and I can advocate fiercely for all of you. (I’ll go to the doctor with you if you need.) I think how I have learned to “do the most” is by bringing my husband who has learned the means by which to get me the help I need. He won’t leave a doctor’s office until he asks every question. He keeps detailed records of all my medical bills, every visit, procedure, and prescription. He reminds me all the time that I am not a bother to these professionals AND that even if I am, it is their responsibility to accept that bother. He has helped me exercise when I have needed it and made sure I rest when I would otherwise push my body too far. He will run to get me electrolytes in a POTS episode, made sure I refill my medications, and picked them up whenever necessary. He helped me get my emotional support animal and manages the pet insurance for them as well.

Sometimes, the best way to advocate for ourselves is to accept there are times when we are simply too weary to do so. Sometimes, we do the most by recognizing others love us on our medical battlefields when that trauma causes us to freeze up. All the best intentions and the most lists won’t help when we get flashbacks on every exam table. Wars are not won by a single soldier. You don’t need to win by yourself either and we are all here to back you up.

I have also made progress in my ability to do the most by recognizing my need for mental health assistance. Let me be clear–this is not because my pain or disease are imaginary. This is because living with my pain, disease, and other things in my life is simply too much to handle without that help. I will never forget the psychiatrist to whom I said I had heard my pain was in my head for so long I was convinced it was. He looked me in the eye and said, “of course it is; that’s where we feel pain.” It was this moment of profound insight. He took this sentence I said and changed its meaning in a single sentence. From that moment, whenever I feel my pain is in my head because of a flashback, I giggle a bit and tell myself “of course it is.” I go to therapy every week and I love my therapist. When I saw one I didn’t love, I moved on. My therapist has researched EDS and has another patient with it as well. This has given her immense insight and not only makes her better with me but she says it makes her a better therapist all around. I agree. Don’t be afraid to ask for this professional help either.

I guess what I’m saying at the end of the day–no matter what any young person says, “doing the most” in this part of your life is not only helpful, it is necessary. You deserve the best treatment, the right diagnoses, and a community of people around you who understand and support you. I hope you will use this community to help you find professionals who make doing the most require less of your energy, less exhaustion, and less frustration–and I hope as you have read this, you know even more that you are not alone.

My Advocate

It has been some time since we utilized this blog but as your new president and the previous blogger for the site, I would very much like to return to use of the site for this purpose. In previous years, I have utilized the site to share some thoughts on life with EDS as well as experiences I would like to believe are as close to universal as experiences will ever come in this lifetime. It is my hope as we increase the frequency of these posts, more of our online community will come to visit and make connections through here.

I will begin by saying, I would not be here were it not for this group. I have made connections I will keep for a lifetime that extend far beyond “just” having EDS. I firmly believe each of us can easily begin to see ourselves as so much defined by this condition because there is no single day or hour not impacted by it BUT I also think there is an importance to defining ourselves by the things that make us wonderful and unique and brilliant and beautiful away from this–and even within the EDS community, I have found people who share in what I love and I will be forever grateful for the people who understand what it is like to have EDS and what I call, “AND fill in the blank.” What I would consider one example is, “live with EDS AND love Taylor Swift.” These people are my friends and my EDS family. I hope you will find people who can help you on your EDS journey but also connect with you in a way that fills in your blank.

ANYWAY, (I know I tend to ramble), today’s topic is something that stems from a conversation I had yesterday evening with an amazing support group leader so incredibly dedicated to her Wisconsin region you would be hard-pressed to find another similar. It goes something like this, “nearly all of us tend to see ourselves as mild because we see another person with EDS we perceive to be ‘worse’ than us.” The conversations are along these lines and often with people who don’t even have EDS, “I have mild EDS. Some people with EDS can’t even work.” OR “I have mild EDS. Some people with EDS rely on a wheelchair every day and I can walk.” OR “I have mild POTS. Some people with POTS pass out every day.”

The “thing” is not that we actually are this perceived mild but so much that we don’t want to take away from another’s life with EDS. Instead of looking at how our symptoms improve or worsen day-to-day, we feel a sense of guilt over these things. For example, I work an intense job almost always more than 40 hours a week. At one point in my life, I was working this job, serving on the city council, and attending graduate school all at the same time. During this period, I almost felt like an intruder in the EDS community despite struggling so much with pain there were days I felt like I might die from the pain because there is no way I could fit with people who couldn’t work. Those same people who were unable to work but were still able to raise children likely felt mild compared to those who were unable to raise children and struggled to do much in a day.

Right now, the greatest struggle I have with my EDS is pain. I have never struggled with the fatigue of the condition. I have little concept of what that portion of the condition is like. This does not take away from “fitting” here nor does it mean I need to describe myself as “mild” by comparing myself to others any more than a person who cannot work would need to make themselves feel guilt because I am able to do so–I would never expect such behavior and would feel immense guilt were someone to do so.

You all belong here. You belong here regardless of wherever you perceive yourself to fall on some scale our brains have invented. You can have empathy for differences in situations without taking away from the parts of your own EDS affecting your life. On days you feel better than others, reach out a hand to them. On days you feel worse than others, take that outstretched hand.

A Bad Pain Day

Together we are stronger!