Seeking Support
Whether you’re newly diagnosed with a condition, or have been living with it for years, getting the support you need is crucial to maintaining your best healthy life, both physically and mentally. There are tons of ways to participate in support groups, whether it be through an actual physical get-together, online meetings, or even actively participating in message boards.
The benefits of support groups are obvious – being in an environment in which other people understand you and can share helpful advice and motivation is always going to be an aid, however it’s important to see how this engagement can benefit your personal relationships. It can be truly difficult for someone to give the support they want to a person with a chronic illness, because they don’t truly understand or know what to say. And it can be equally hard for the person affected to really share in words what is going on in their minds and with their bodies. Going to an outside source of support can create a better bond between the caregiver and the person who is ill.
Often times, people are hesitant to go to support groups because they feel what they are going through is too personal or intimate to share with a room full of strangers. So, if you’re feeling hesitant, think about the benefits of just going and listening. It can be more beneficial than you may believe to just be silent for an hour and soak up what others are saying. And if going to a support session seems like you are relinquishing some of your independence, just remember that everyone needs a helping hand sometimes, just don’t be afraid to take it.
Below are some great resources for support groups from some of our friends in the rare and chronic disease community. Also, don’t hesitate to ask your doctor or medical professional where to look.
Pulmonary Hypertension Association
Pulmonary Hypertension Central
MD Junction Pulmonary Hypertension Online Support Group
Daily Strength Pulmonary Hypertension Online Support Group
Pulmonary Hypertension South Africa
Pulmonary Fibrosis Foundation
Daily Strength Pulmonary Fibrosis Support
Coalition for Pulmonary Fibrosis
MD Junction Pulmonary Fibrosis Online Support Group
Narcolepsy Network
Daily Strength Narcolepsy Online Support Groups
Narcolepsy Online Support Groups
Huntington’s Disease Society of America
Daily Strength Huntington’s Disease Online Support Groups
Huntington’s Disease Lighthouse Families Online Support Groups
Huntington’s Disease Advocacy Center Message Boards
Huntington’s Disease Youth Organization
Infantile Spasms Center
The Infantile Spasms Community Board
Alpha-1 Association
Daily Strength Alpha-1 Online Support Groups
Are there support groups which you have found helpful? Please share with us!
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3 Responses to Seeking Support
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There are some amazing support groups out there, like Pulmonary Hypertension Association, Pulmonary Fibrosis, DailyStrength, Treatment Diaries, Coalition for Pulmonary Fibrosis, Narcolepsy Network, HDYO (Huntington’s Disease Youth Organisation) and MORE! Check out our blog to see who may be able to help YOU. Or share with us a group we may have missed!! PLEASE ADD PH SOUTH AFRICA!! http://www.phsa.co.za
I was diagnosed with plumonary hypertension in July 2012. This has changed my whole life. I had to give up my business,home, church and relocate to KY, This changed my whole life. I am happy to say I am doing fine! My problem I have not met anyone since I have been here, therefore I am home all alone seven days a week and this causes depression. What advise do you have for a person like me?
Martha,
We are sorry to hear about your struggle.
We have two recommendations:
Visit the website of Pulmonary Hypertension Association. Here is their web link: ( http://www.phassociation.org/FindaSupportGroup?tab=12 ). They can connect you with others and perhaps your voice might be a positive voice in creating awareness about the illness.
Social Media continues to be a great outlet for others who desire to voice their concerns and opinions, while engaging with others who have similarities.
Never give up!
The CVC Team