You Are Not Alone: Finding Community in Chronic Pain
Chronic pain and migraine disease are isolating medical conditions. One of the most important things that I have found to help me with this sense of isolation is connections within the migraine community and within advocacy groups. I know how difficult it can be to reach out to others for help and support, but this has been a literal lifesaver for me.
I started becoming more involved a number of years ago when I was finally diagnosed with Chronic Migraines along with a second diagnosis of Idiopathic Intracranial Hypertension. Being diagnosed with a rare disease such as IIH at a young age was difficult, to say the least. My treatment involved medications and eventually a number of surgeries to implant shunts in my brain and spine. I found others with these conditions and reached out to them. I was so lucky to find a friend who also had IIH and just happened to be moving to Phoenix! We have become best friends and a constant source of support during our toughest times. Finding a fellow “medical unicorn” has opened my eyes up to other treatment modalities, support, and she offers another sounding board for those times when I am having a rough day Finding a person who “gets it” can be a great starting point for not feeling so alone when facing an isolative disease or condition.
One of the most common statements I hear from the chronic migraine community is “How CAN I be more involved when I feel this way?”
I have learned to take those good moments and cherish them. During those good times, I work on my advocacy work and reach out to others who may be in a similar situation. I know during the times that I don’t feel the greatest my support groups will be there for me and offer me support.
Finding support groups has been a true game-changer for me. I have found community in the unlikeliest of places — Twitter and Facebook. The chronic pain and migraine community are strong and resilient. We will not be silenced!
Some of the biggest takeaways that I have learned in living with a migraine disorder for 30 years involve learning when to ask for help. It’s a difficult thing to do- asking for help- but necessary to maintain a strong balance between life, work, social activities, and heath.
I am a strong advocate for asking for help from friends, the community, and family.
Some rules I live by as a chronic migraine patient:
- It’s OK to have to reschedule — at least by making plans you have something to look forward to in the future.
- Ask for help when needed — it’s OK to not always be the strong one.
- Investigate new treatments and be a strong advocate for yourself.
- Dealing with migraine disorders is not a sprint but a marathon- We as patients need to train for the journey.
- Try to come up with daily goals for yourself taking into account your energy and level of pain. Some days your goal may just be to get out of bed and maybe take a shower while other days you may be able to get out of the house. That’s OK. Your energy level may fluctuate but knowing you accomplished something that day is a reward in itself.
Finding your tribe may only be half the battle of living with migraine disease but it is a step in the right direction for your overall health and wellbeing. Good luck; and explore the big wide world that chronic migraine and pain patients have created! You will find a community of love and support.
Elizabeth Arant is a member of the National Headache Foundation’s Patient Leadership Council.