Shedding Light on the Darkside of Dysautonomia

Isolated, jaded, and misunderstood. Chronic illness has somehow changed me, altered my personality and my outlook on life. Dysautonomia, Ehlers-Danlos Syndrome, and Chronic Pain have really worn me down. I am so exhausted and frustrated with my own body. I am trapped. Day after day of this is just so damaging to the soul. It was the thing that no one told me.

When newly diagnosed, and even while searching for my diagnoses, I combed the internet hungry for information. I had a need to know all that I could: every symptom, treatment, and expected prognosis. I prepared myself, or at least tried, for what was ahead of me. I tried to buckle down, to keep hope. But then the pain set in and wore me down. It eroded me from the inside out, eating away at my positive thoughts and strength reserves. I began to wilt and lose faith; I suddenly understood why suicide was so common in our communities. We are often left hopeless, helpless, and alone in our struggle because the able-bodied just can't understand. I know I have often felt at the end of my rope and beaten by these conditions, seeing no hope in sight.

Sometimes it is so overwhelming that it is all consuming and feels as though we will never win. Yet, we continue to fight. We hold to hope as we fight for cures, research, and more awareness. It is hard to find joy in the days that are so difficult, but we still search for those little glimpses and glimmers of optimism. How can we continue? How can we hold on? How can we make sure that we are not overcome emotionally? With help. There are resources that can serve as a lighthouse for those who suffer and who are alone in this:

1.Don’t fight alone

Find a support community of other people with your condition(s). This will show you that others share your pain and triumphs. For those of you who also share my conditions, I recommend Dysautonomia Support Network. This network serves those with Dysautonomia and a host of related conditions. You can tap into a national or state support group (or both). I have made lifelong friendships, and have also been able to ask questions in the larger community that I would not have felt comfortable asking other places. DSN: DysautonomiaSupport.org

2. Build your team

This cannot be stressed enough: having a medical team in place that understands your disorders and takes you seriously is one of the major things that can turn your situation around. It may seem like I am talking about a medical unicorn, but, sometimes, it is just one doctor that is extremely knowledgeable and supportive. For most, a collaborative team approach is best. Generally, one doctor manages your care, typically your Primary Care Physician, while working with other doctors in modalities such as cardiology, neurology, or rheumatology. Don’t forget the value of Physical and Occupational Therapists when putting this dream team together. It can be totally infuriating and frustrating to find the right team, but the right doctor(s) is out there. Keep looking. Having the right team can not only mean having the right diagnoses but also the support you need for therapies and treatments. You can find a patient-recommended list of doctors on DysautonomiaSupport.org, as well.

3. Surround yourself with a tribe of believers

Nothing will destroy your spirit like having the people around you tell you that what you dealing with is, “all in your head.” Having people around you that validate you and support you can do more for your mental well-being than any article or self-help book (even this one!). You need at least one person that you can count on to be there on the good days and bad. Positive people will leave you with energy and will make you feel better about yourself and will improve your mood just by being with them. Negative people tend to drain energy from you and make you feel worse when you spend time with them. Find your person and, when possible, cut the negative people loose!

4. Know when to ask for help

Self-evaluation is a crucial part of maintaining your mental and emotional health when facing the enormity of chronic illness. You have to be able to check in with yourself on a regular basis and identify when you are not in a good place mentally and emotionally. How is your mood? Your appetite? Do you feel like withdrawing socially? Does this just feel like more than you can handle? Understand that these feelings happen to a lot of us and it does not make us weak, nor does asking for help. Depression and anxiety run rampant in our communities, and we are often embarrassed or feel ashamed. Mental health professionals make an excellent and vital part of any chronic illness patient’s health care team. Additionally, being open and honest with trusted friends and family members about how you feel and what struggles you are having can serve somewhat as a safety net. If you are in crisis, the National Suicide Prevention Hotline is available 24/7 at suicidepreventionlifeline.org.

While there is certainly a dark side of Dysautonomia, you do not have to reside in darkness. Remember, we are in this together. Our community is stronger because we are shedding light on issues, like depression and anxiety, that we face, secondary to the conditions themselves. I stand, unashamed, and say to each of you, I have been there. I’m often still there. But today, I’m okay and you can be, as well.