When living with a disability, illness, chronic pain, or undiagnosed condition, the physical symptoms usually take the spotlight when it comes to you and your care. But what often falls to the wayside is the importance of feeling like you are not alone. This is why your community becomes important.
When overcoming the physical challenges of your illness or disability, it may be easy to ignore or overlook the emotional and physical tolls that so often coincide with illness.
Heather is no stranger to illness in her past. By age 40, she was diagnosed with a degenerative disc disease, but it was manageable. She went to her physio appointments, consulted a chiropractor, got in the pool at her local community centre three days a week, and moved into a smaller place with less stairs so she was able to move around more easily.
She Was Given The Full Run-Around About Medical Care
But when she started to experience other symptoms, like shortness of breath, general brain fogginess, and constant exhaustion, she knew something was wrong. As we spoke about in one of our earlier posts, Heather was given the full run-around when it came to her medical care. She felt bounced around between specialists, never getting much more perspective from one to the other.
When she was finally diagnosed with a rare heart disease, Heather was relieved she didn’t have to go on without a diagnosis. However, her surgery was scheduled far into the future and her long term benefits were being denied as her insurance company claimed she could work during this time.
Share Lawyers worked to get Heather the long term benefits she was entitled to.
Heather Missed Her Sense Of Community
Even with the stress of her work and surgery gone, Heather was still living with her symptoms. Heather missed her routine, her old life. On good days she was able to get to the community centre to get into the pool, although it was very inconsistent. When she was able to go, she met up with the same ladies who also did the pool time. But since she wasn’t there as often and had to move slower, she felt left behind in more ways than one.
She also missed the connections she had at work. The people she worked with weren’t just colleagues to her, they were friends and she missed interacting with them every day. Even though she did see family and friends frequently, it was hard to be around them sometimes. She always felt like she was putting a burden on them if she talked about her illness.
Heather turned to the internet to find a support group for people with rare diseases.. She found the connections she needed through chat groups. Being able to read about the journeys and experiences of others, and to access resources was so helpful and reassuring.
She Found A Support Group
She found a cardiac support group that she could meet with in person in Calgary. All kinds of folks were there - some who had lost loved ones to cardiac disease, some who were in the midst of medical issues - and there was a specific focus on women living with heart disease. Heather was very nervous at first, feeling that maybe she had made the wrong choice.
But then a voice came up behind her with a tap on the shoulder. “Don’t you think we’re just too young for this?!”
This was Sandy, a woman also in her 40s who had suffered two major heart attacks. Sandy and Heather were giggling in no time, sharing stories that might have been painful at the time (like falling asleep during a birthday party because of their illness) but they were able to laugh about it.
Meeting A Friend Really Helped
Heather felt that she really found a friend in Sandy, and even though they didn’t see one another in person often, they talked on the phone, emailed, and shared photos and inside jokes through social media. Since Sandy had already had an open heart operation, she was able to talk to Heather about her experience, quell some of the fears she had, and manage her expectations.
Sandy also shared the same sense of humour as Heather and they joked that instead of matching best friend tattoos they would have matching chest scars!
When Heather first received a rare heart disease diagnosis, the furthest thing from her mind was making a new friend. But by reaching out for someone else in her community who had the same experience as her, not only was she able to work through her illness, but found a life long friend.
*All names and identifying details have been changed to protect the confidentiality of all involved.
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