Receiving a chronic and life changing diagnosis, such as MS, brings changes to your life that are both expected and unexpected. When we first received our daughter’s MS diagnosis 16 years ago, we had the love and support of our families and of our friends. We were constantly asked if there was anything we needed for our daughter and for our older children. As time passed and her disease was not as obvious to the eye, we became used to the remarks of “If she looks good, she must be fine”. With that the concerns and offers declined as well.
As our daughter became less able to maintain normal activities of her friends, it was heartbreaking to see them move on with their lives without her. Her fatigue and cognitive problems kept her from competing in sports and nightly social activities, such as her Church Youth Group. I am not sure she fully understood or even noticed that her friends were living their lives without her, but it broke my heart to see her alone.
The unexpected result of her MS is seeing that our adult friends are following the same path. Yes, they do realize the extent of her illness and how it has made it impossible for us to leave her home alone. What has happened is that they have also continued living their lives without realizing that we are very limited to join in. We are at the stage of our lives when we thought we would be able to come and go on a whim, without having to worry about having a babysitter. The evils of social media lets us see how our lives could have been had MS decided not to enter our lives.
I wish that family and friends realized that this is a lifetime disease that does not get any easier to live with. Yes, we learn to live with the demands that MS has put on us. But this does not lessen the need for us to have help and moral support from those in our lives. Being a caregiver can be a very lonely and isolating job. I am thankful for my MS Caregivers I have met on social media, but to have our friends remember that we are still here fighting this battle would benefit everyone.