I have hypermobile EDS. I hope to raise awareness with my book on the struggles we face, and rise up against as we advocate for each other. Read one patient's story that really moved me shared with permission from EDSAwareness.com and the founder's daughter, Deanna Hamm.
The 4 Most Painful Losses Suffered by EDSers and How to Manage Them
Ehlers-Danlos patients (EDSrs) experience many losses in their life due to this devastating disorder. Many of these losses are physical, but deep layers of emotional and mental stress add to our burden. In our experience, these are the 4 most painful "non-physical" losses that EDSers grieve throughout their life.
4 Most Painful Losses Suffered by EDSers:
1. Loss of ACCEPTANCE
Loss of CONNECTION with others - I feel that no one REALLY understands what I am going through. Since EDS is poorly understood, I have become accustomed to judgment and scrutiny. Being misunderstood has become an expected and constant part of my life. Often I am viewed as being weak and lazy. To the untrained eye, I look perfectly healthy - at least
from the outside. Through the years, several doctors have told me “it’s all in my head”. I know the pain I feel is real, so this demoralizes me and makes it hard to trust medical professionals. Even though I now have the validation of my EDS diagnosis, I am still often misunderstood. Sometimes it’s hard to gather courage to talk to yet another doctor or friend about my health. I must prepare for rejection and criticism, once again. It is challenging to keep a healthy self-confidence in this situation.
Sometimes, I am perceived as a chronic complainer, and I have lost friends who get frustrated because they do not know how to help me - or worse yet - do not believe me. Others don't understand why it is difficult for me to make plans or keep commitments. It's because I cannot predict how I will feel later that day or next week. I wish they could learn more about EDS. Then they may realize that I am not exaggerating or causing difficulties
for them on purpose. I really do try my best! I am actually over-achieving on most days when I should be resting - they just cannot see it.
Some friends or family get weary because I need extra help with physical tasks. It bothers me to keep asking for help with things that others view as simple tasks, such as opening a door or picking up something that fell on the floor. I rely on family and friends to help me maintain a manageable level of function and comfort. Thankfully, some family members help me willingly and try to understand. But the ones who do not have EDS themselves can't be expected to really understand - not completely. Other family members don't relate at all.
They may resent my needs or request for help, make me feel guilty for asking, or simply refuse to help. Maybe they think I should "tough it out" or cannot imagine I am in that much pain. I wish someone could explain to them that "pushing through pain or fatigue" is the worst thing to do when you have EDS.This is because most EDS pain is due to acute trauma that causes actual tissue damage. (It’s not just an ache or muscle strain that
they might be familiar with.) Sometimes I feel like I have to struggle alone. I feel ignored. Often I feel unimportant and like I don't matter to them. Sometimes I just feel like giving up, not bothering others and just living alone with my pain….but that is not my style.
2. Loss of my JOB, INCOME & my IDENTITY
Loss of a PLAN-able and CERTAIN future - When I meet new people, they often ask "what do you do?" I don't know how to respond to that question anymore. I lost my job, my career, my livelihood. I am a well-educated person. I went to a good college and I was employed at a good company until EDS made it nearly impossible to continue working on the computer. I
worked full-time for 12 years, enduring excruciating levels of pain - not realizing that I was damaging my joints by trying to "push through the pain". I knew something was wrong, but I was misdiagnosed over and over again.
Two years prior to my EDS diagnosis, I had reached the point physically that I could not work anymore. So, I applied for disability. Filing for disability can be a huge undertaking – even for those who know the cause of their disability. Since there are limited number of doctors who can correctly identify EDS; it can take a patient years to find the needed doctor’s evaluation and diagnoses for a disability claim. I worked hard, and it took a few tries - over a couple years. Eventually, with my diagnosis and stacks of supporting documentation, they
finally granted it. Again, I still look healthy. During that process, my claim was always in question!
Finances are now more difficult, and I continue to be very frugal. My medical bills really add up, so I use coupons at the grocery and I try to buy only what I need. I buy my clothes at thrift stores and look for budget haircuts & beauty products. Sometimes I feel like we are living “hand to mouth”. Planning for the future is worrisome because there are many health problems that can develop as a consequence of EDS. And most EDS patients report that symptoms progress and worsen as we age. The only thing that seems certain in my finances
is that medical expenses will continue to increase.
3. Loss of INDEPENDENCE
Loss of CONTROL over my daily life and activities - I struggle with pain and fatigue while trying to accomplish "simple" daily-living tasks. It seems like most of my
day is spent nursing myself to try to maintain my health and taking care of “me.” I make plans for the next day knowing that I may not accomplish them because of my physical condition that day. If I dislocate or sprain a joint, shift a hip out of place, or pop a rib, I will be in even more pain than usual. That extra pain might last for a few hours or a few days. As a result, I may have to put off a trip to the store, making a meal, wiping up or picking up after myself. I may have to cancel a medical appointment. Frequently, I miss the opportunity to visit with friends or family for a planned social activity.
I have to be extremely careful about what I try to do. I must be very conscious of how I am moving, so I do not injured myself. I have learned to avoid many tasks that consistently result in injury. Still, every day there are other injuries that cannot be anticipated. I would love to clean my house or do some yard work. Most days, I struggle to wipe the counters and load the dishwasher. I prioritize my activities as much as possible.
Unfortunately, EDS has control over how the day unfolds - not me. My EDS-related gastrointestinal problems and POTS add to my difficulties. I wish I could exercise everyday. When I am having a "good day", I am able to exercise or do some physical
therapy. This feels rewarding. I used to have many hobbies & activities I enjoyed doing. I am still interested in many, but the majority of them are no longer possible.
I grieve the loss of activities I could do in my teens and early 20s, but I cannot do now - in my 30s. On many days, I feel like I am 80. Now I need to be much more cautious to protect what integrity is left in my joints. It is very physically and emotionally draining to live this
way. The only thing that feels certain is that there'll be more physical-ability losses to grieve as the future marches on.
4. Loss of my ability to CONTRIBUTE to loved ones and to society
Loss of SIGNIFICANCE - I'm not able to make a difference
Loss of SATISFACTION from accomplishments and successes
I had great aspirations for my life. I visualized a vibrant and active family life and a rewarding career, while helping others in need. Now I am the needy one. I spend most of my day slowly and carefully trying to accomplish my daily living activities and saving energy for doctor appointments. It seems like I spend more time with my doctors, massage and physical therapists than I spend with my friends and family. I have no children. Even in my early 20s, I reached the point where I was unable to even lift a newborn. I knew I had too much daily pain and fatigue to take care of a baby or child. Now it is much worse. Sometimes I feel
like I don’t matter and have not accomplished anything significant in my life. Through my struggles, I have developed tremendous understanding and empathy for others. And I want to feel the satisfaction of helping others in need... But don’t know how. Whatever I do ... it has to be easy to incorporate into my life and must be flexible, so I can do it on my "good days".
On my "good days", I have spent a lot of time learning about EDS on my own. When I was first diagnosed, I kept thinking, "There must be someone out there who has gone through the same steps that I am doing right now. Each of us spending hours and hours searching on the same topics. Why must EACH of us "reinvent the wheel?" Why can't we all benefit from each other's efforts to gather information and sift through it to extract what's important." After all that effort and pain from working on the computer, I wish I could contribute
what I've learned from my research. If EVERYONE contributed knowledge on their researched topics & experiences - and we put it all in one place - wouldn't that be a wealth of information?!
I wonder if other EDSers are having the same challenges I have? What was their experience with diagnosis?
How are they dealing with their daily challenges? I wonder what solutions they've discovered? How are their families learning ways to be supportive? I wish I could get feedback and advice from people who are going through the same difficulties that I am. I have some tricks and tips of my own that I would be excited to share with others. What if there was a place where I could share my learned knowledge and experiences with others?
My friends & family don't fully understand what I'm going through. If they had EDS, they would "get it". I've never met someone else who has EDS, but I've been daydreaming about it lately.. I wish I could form friendships with other EDSrs in my area. We'd have a lot in common to talk about. We could offer each other support and share good doctors. Our families could meet each other and learn more about EDS and how they can support us. We could spread the word about EDS in our community... maybe even change the life of an
undiagnosed person by telling them about EDS! I could really make a difference then!
I wish there was an easy way to accomplish these things. Because there are days when I really need support - and days when I really want to contribute and encourage others! I was beginning to feel like I am the only one who has these needs...Then I found EDSawareness.com!