friends family collage

I had to see a neurosurgeon recently to discuss the results of an MRI. I received the doctor’s report a couple of weeks later. It’s always strange to read a report detailing all my various ailments, but this one felt even stranger, especially one phrase in particular:

“Impression — This unfortunate young woman suffers from several quite unpleasant congenital disorders including Ehlers-Danlos syndrome and a diffuse dysautonomia.”

Eep. Is that me he’s talking about? My first reaction, after a minute of feeling slightly taken aback, was, “Wait a minute, I’m not unfortunate!”

I know what he meant. Genetically, physically, in many ways I drew the short straw (although I do think I got lucky in some ways as well). Every day I have chronic pain, fatigue, and dysfunction of various organ systems. I haven’t eaten a meal in years and get all my nutrition through a tube implanted in my small intestine. However, I would not call myself “unfortunate,” and I’ll tell you why.

First, my husband and my family. For many people with chronic illnesses, it’s very difficult to have a relationship, and I’ve heard stories of relationships falling apart when one person becomes seriously ill. I’m unbelievably blessed with a husband who decided he wanted to marry me even though we would not be able to have what you might call a “normal” life. He knows the day will probably come when I’ll need a lot of care. He had the chance to turn away but stuck with me and never complains about all my illness has taken from us. He’s been with me through all the hospitalizations, surgeries, tears, and frustrations. He supports me, listens to me, loves me, and pushes my wheelchair.

I’m very close with my parents and two brothers. I spend a lot of time with my parents, who live an hour away, and see my youngest brother frequently (my other brother lives in Colorado). I’ve gone through some incredibly challenging times in my life that were also very difficult for my parents, but they never gave up on me. They’ve helped me through my illness, taking on doctor’s appointments, hospitalizations, surgeries and research. They support me physically and emotionally and are always in my corner. They also raised me in a way that taught me how to persevere in the face of adversity and how to trust in God in my darkest hour, lessons I draw on every day.

Before I got sick, I had many acquaintances but few close friends. Now I have very few acquaintances but a handful of good friends whom I really value. I have a close friend (we’ve known each other since we were in middle school and were in each other’s weddings) who is also chronically ill, and we’ve become even closer because we’re going through similar struggles. I also have a great church family. My dad teaches a Bible study class with a group of people who’ve been together for years. I join the group over the phone when I can’t be there in person.

I have battled with depression and other mental health issues since I was a teenager, but for the past few years I’ve been doing the best I can remember in that area. I don’t know what I would have done if my mental health was still so tenuous while I was going through all this. One of my biggest blessings is my cheerful spirit. I believe my ability to be optimistic, to have a sense of humor, and to be able to find joy in the little things is a gift from God. Another gift is my faith — I feel so fortunate that my faith has not been rocked by my physical problems.

Here are some other ways I’m fortunate: I have a nice apartment in a good neighborhood, close to several of the best hospitals in the country. I have two cats that lift my spirits and keep me company (they make me so happy, I never would have known a pet could make such a difference). I have some well-renowned, caring doctors and good health insurance. I have AGMD and other support organizations, and I’ve met some great friends online through chronic illness communities.

There are some other ways I’m fortunate that may seem obvious, but I don’t take any of them for granted. I’m able to take care of myself and do almost all tasks independently, and can walk unaided most of the time. I can drive if I feel up to it, and I have a car. I have my vision and hearing. Before I became very sick, I was able to travel, play sports, hike, go to music festivals, and just generally live to the fullest. I got married in 2015 and was able to go on my honeymoon, which were the best 10 days of my life.

On my dark days, I try to think of these things. I pull out my scrapbook and smile at all my happy memories. And I do have dark days, I don’t want to give the impression that I’m fine with all this. I’m in pain and sick all the time, and too fatigued to do much. I have doctor’s appointments that frustrate me to the point of tears. I have weeks where my symptoms flare to the point where all I can do is lie on the couch watching TV. I keep having to give up things I love as my body betrays me. I have days when everything seems to weigh on me, when it seems like I can’t push on. But then I wake up the next morning and keep going, and that ability to persevere in itself is a gift I’ve been given.

friends family collage

After I finished reading the neurosurgeon’s report, I gave it to my husband to read. I found it on the counter later with a note appended to the bottom:

“Husband’s Note: This unfortunate young woman makes my life so much more fortunate each and every day. I would not change a single thing about her.”

So, I’m not unfortunate. I’m blessed.

Follow this journey on Digesting the Facts and on Instagram @DigestingTheFacts.

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I have had some time now to come to terms with my diagnosis of hypermobile Ehlers-Danlos syndrome (EDS) and to find ways to adapt and cope with the changes and deterioration of my body.

I have been to see numerous general practitioners as well as physiotherapists and specialists throughout my journey to this point. EDS patients have to do a lot of our own research to gain a better insight into our condition. When I think about the journey I have been on, I feel the hardest part of adapting has been staying positive and hopeful about what the future holds for me. Unfortunately, this is because so many
medical professionals I have seen have tried to take away my hope. This made me realize that taking away someone’s hope is one of the cruelest acts that exists.

I don’t for a moment think this is ever done intentionally. I believe a lot of the time they are trying to make sure we are realistic and know this condition cannot be cured. What they don’t understand is we already know this. This is a detail that constantly haunts us and is a fact we don’t need to be reminded of. Just because there is no cure doesn’t mean there is no hope. I think there is always hope, no matter how bad things may appear, and crushing someone’s hope is so dangerous.

So maybe sometimes we must create our own hope. That is a shame, but we have probably been through worse. By the nature of what we have already been through, we are incredibly strong people.

We can focus on what we do have and what we can achieve. We might be very restricted physically, but we can still find a way to have a positive impact on this world. Whether that is loving those close to you with your whole heart, being kind to yourself, supporting others with the condition, or raising awareness of EDS, positivity will always radiate brighter than those who try to crush our hope.

“Pursue something so important that even if you fail, the world is better off with you having tried.” –  Tim O’Reilly

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Photo by Jose A. Thompson, via Unsplash

The word health means different things to different people, depending on the situation. The most famous definition of health is The World Health Organization’s (WHO) definition in 1948:

“Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

This definition has been criticized a lot and most criticism concerns the absoluteness of the word “complete.” This requirement for complete health would leave most of us unhealthy most of the time.

A year ago I was diagnosed with Ehlers-Danlos syndrome which is a hereditary connective tissue disorder. I had been living with some serious health problems and chronic pain for a long time so I was relieved to finally have a name for my symptoms. At the same time I was in a huge crisis, thinking I would never be healthy again. Can you be healthy with chronic illness? Since I have a genetic disease, have I always been ill? Even in the times when I have felt myself to be healthy?

After some soul-searching I refused to see myself as ill and “unhealthy” the rest of my life just because my illness can’t be cured. I started to think of the word “health” more like an ability to adapt and face my physical – and emotional – challenges. Nowadays health for me means a constantly changing state, which is affected by diseases, symptoms of chronic illnesses and physical and social environment, but above all experiences, values and attitudes. Each person determines their health in their own way, and this definition is ultimately the most important thing.

Losing my health and my concept of health for a while made me readjust my life and lifestyle. Even though I thought I was living relatively healthily, I was demanding way too much from myself and my fragile body. My lifestyle had been very hectic and stressful for my whole adult life. I realized I needed to slow down and respect my illness, not fight with it, in order to feel myself healthy and well. This realization has improved my health more than anything else and it has been a starting point for me to seek health and wellness again.

With love,

This post originally appeared on Chronically Janni.

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As a full-time, non-third year college student living away from home, most people assume I live a wonderfully free, independent life in the city. But the reality is I do not. I live in one of my university’s residence halls in an apartment, but I do not live with my roommate as any other student would.

I do have a roommate, but she is my brother’s girlfriend, and my brother lives right across the hall. This was a strategic placement by the resident director in my building. If it wasn’t for that seemingly small decision, I could have never made it through my second year of college. There are some days when I am fine, yes. But there are more days when I am too exhausted and in too much pain to do any of the regular daily tasks that most 19-year-olds are able to do themselves. I need help with every meal and I often need help to get ready for bed. I cannot go into the city on my own, in case something happens that requires someone who has at least heard of Ehlers-Danlos syndrome.

woman braiding a girl's hair
My brother’s girlfriend, Sabrina, braiding my hair because having it loose is too much to handle.

I live a seemingly independent life on the outside. I do all of my studying, my internship, my various side projects and extracurriculars. But this is all purely internal. Obviously, it requires some level of activity (writing, typing, etc.), but I can do all of those things without needing to reach down to the floor to untie my shoes or balance a sharp knife in my trembling hands, or even to open the ever-important medications that will help me to maintain the life I lead.

College life is exhausting and hectic, but it is easy for me. I live in a building with an elevator and I am able to use my laptop for nearly everything. I am in a climate controlled apartment sitting on the flat surface of the city streets, which I can walk with relative ease. This all reduces the absolute dependency I live with. Each decision my brother or his girlfriend makes affects me somehow – this is something I must live with each and every day.

And now, I am one day into my summer break, and while the semester is mentally demanding, breaks are physically demanding. My childhood home sits on the top of a mountain as an “outside temperature is the inside temperature”-type environment with stairs to get to the kitchen, stairs to get to the bathroom, stairs to get to the car, stairs to get to my bedroom. A place where I am happy to be spending time with family, but a place that is incredibly taxing on someone whose knees and ankles give way with the slightest misstep, a person who is heat-intolerant and who lives with hypoglycemia.

When I come home I am relieved to spend time with my mom, but for me, college life is much much easier.

family sitting together on the couch

At home, I rely upon my mom to retrieve things for me so I can avoid a few trips down the stairs. I need help to do everything. I do not get as much rest in the day so I become exhausted by the end. At home, I must go to work with my mom each day to avoid stairs and oppressive heat. I cannot drive and thus, I cannot be left at home alone for more than a few minutes in case something happens while everyone else is tough to contact while at work. I get looks from students and coworkers, questioning my presence as though this is an odd way to spend my break. I feel like I live a life that places a burden on others, which seems to intensify with every change of scenery.

And yes, it is a strange way to spend my break, but it is the better way. This way, I can function. I must find some form of relief from the strain of leaving “city-life.”

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I am learning the discipline of carrying on, the stiff upper lip, the one-foot-in-front-of-the-other method of facing the day. I am watching my daughter Sophie and, unlike me, she either has an innate positive attitude or she skillfully disguises any fear of the future.

It occurs to me that writing about how I am struggling with Sophie’s diagnosis may appear completely self-centered on my part. She is the one feeling the pain, constant illness and interrupted life. Still, I respect and love her enough to let her come to her own words. I will not usurp her privilege to express herself by trying to write about her experience through the eyes of her mother. She is bright, thoughtful and intelligent and I know she is developing her own philosophy of survival that she will share when she is ready. In the meantime, I must write about my experience as a mother and get this fear and worry out of my body — and I’ve always done that by writing. So, please forgive me if this seems selfish. In the end, it keeps me moving forward to help Soph.

So, we have seen the geneticist and are waiting for some results that will tell us if she has vascular Ehlers-Danlos syndrome. None of us think she does, but she needs the testing done just to make sure. The doctor is running four different genetic tests in three different labs and the first results will be back in the next two weeks.

The next doctors we need to see are the neurologist and an endocrinologist. I can’t believe how many systems in the human body EDS affects. Sophie is experiencing new symptoms — tremors and joint pains (so far she has complained of legs, ankles and back). She doesn’t ask for painkillers very often, so when she does I know it hurts. She continues to have gut pain and nausea daily so that leads me to…the visit to the gastroenterologist.

This visit was devastating to me. I could barely contain my despair and tears in front of him, Sophie and Guy, my husband. I have spent the last two weeks going over his conversation with us in my mind — over and over and over. I haven’t spoken to anyone about how I feel after hearing his opinion — not Guy, not Sophie. Besides the geneticist, he is the only physician we’ve seen so far who has experience with teens with EDS and he practiced for years with one of the three experts in the U.S. at Cincinnati Children’s Hospital. (Her cardiologist works with kids who have POTS and our GP is learning with us.) The news was not hopeful. He was straightforward and Sophie was immediately angry with him. I understand her anger and yet I am so grateful for his honesty.

There was a truckload of information he was trying to pass on to us, but two things shot out of his mouth like a 3-D arrow right into my heart.

1. He said, “If there is one word I can use to sum up EDS, it is pain. Pain, pain and more pain. And there is no treatment that fully manages it. And it does not get better; it gets worse.”

2. He turned to Sophie and told her she needed to learn how to cope, because Guy and I will not be there to take care of her later in life when it becomes very, very hard. He was tough and unrelenting for what seemed like hours (it wasn’t, but time slowed down for me). He emphasized to Sophie that she must get up, get out, face the pain, do things even when she knows she can’t. She must learn to cope, cope and cope. She was furious. It is the first real emotion I’ve seen in her since her diagnosis.

In the end, he hugged her and told her that the next time he wouldn’t be so rough, but she needed to know what she is facing. No other doctor was so honest with us. They have all been supportive and caring. So was he. But in a drastically different way.

So, I’m left thinking about my beautiful daughter with a lifetime fight ahead of her. I am watching the pain begin and, as a mother, I wish with my heart and soul it was me. I am struggling with the fact that I won’t always be here to take care of her. And maybe that’s not right either. She must go out on her own long before I leave this earth (I hope) and I am learning how much that scares me. I want her wrapped in my arms, but that is not the best thing for her.

I know she needs to learn resilience. I know that. But how do I let my heart in on that wisdom?

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Thinkstock photo via monkeybusinessimages.

I’ll never forget how distraught I felt leaving that disappointing doctor’s appointment. Many of us have probably had those appointments you want to run away from, but this one nearly broke me.

I had been searching for over two years for the cause of my 7-year-old son’s terrible pain, going specialty to specialty, place to place. We ran test after test. He was so sick and in so much pain.

Now, after all this time, I finally know what was causing his symptoms. It was like I took a page out of the Ehlers-Danlos syndrome (EDS) symptom manual, and at the top was the picture of my son. I had walked into this appointment with my heart completely full of hope, and I walked out feeling I had none left at all. I needed a diagnosis, but I didn’t get one. The hospital we had waited months to be accepted for doesn’t diagnose EDS. I was at a loss. EDS had been mentioned by several doctors, but we left empty-handed.

I cried the entire hour and half drive home. I cried until I couldn’t breathe. I was mad and sad, disappointed, and most of all exhausted. My emotions felt like a heavy, wet carpet draped over me. I almost never let myself get so upset. It wasn’t my finest moment.

When I got home, I pulled myself together the best I could and sat down at my computer. I wrote something on a large Ehlers-Danlos support group on Facebook, reaching out to anyone who would listen. Honestly, I expected the usual vague response. It was basically an attempt to keep my remaining sanity by talking to anyone who would listen. I felt like I was screaming for help, silently.

Unexpectedly, a lady from the group of over 20,000 people messaged me, asking me where I was located. Low-and-behold, we live in the same state. It was a welcomed surprise. She told me her story about her son who also has EDS and how she was also at a point of breaking when someone reached out to her. She happened to be a support group admin for the metro area within our home state. It was a comfort to hear from another mother who knew what I was going through, fighting for my son.

In a group of thousands of people, this lovely woman heard something from that post that made her stop and reach out to me. What she did next changed our lives. She added me to the amazing local support group and welcomed us with open arms. She also gave me a geneticist’s contact information that specializes in EDS. Everything moved quickly after that. The geneticist gave us an appointment (in that same year), diagnosed my son clinically, and confirmed that diagnosis with whole exome sequencing.

If she hadn’t reached out to me, I don’t know what would’ve happened. I felt like giving up. I felt the world was against us, and I had nowhere to turn. She changed our lives with one private message, which only took a few minutes out of her day. Not only are treatments and preventative measures more readily available for my son now that he is diagnosed properly, but any doubts about him having EDS were squelched with a genetic golden ticket. Best of all, I gained a lifetime friendship. She and I have become the best of friends. We share our journeys with each other daily, and she has inspired me to reach out and help others just as she helped me.

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Thinkstock photo by KristinaJovanovic

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