My husband and I have been married for almost 2.5 years. He is 27 and I am 26. He was born with spina bifida and is a paraplegic, though still able to walk/drive with the help of a body brace and crutches. I have always been his primary caregiver, as there are some things he cannot do himself.
I was just diagnosed with MS in June and am not doing well. We are both emotionally drained from fighting because he is having a hard time understanding what it's like for me to have been healthy for 25 years and just now be diagnosed with a chronic disease. He is very strong-willed, believes he can do anything he puts his mind to, does not let his disability put him down or limit him, and always pushes through things no matter how tough. He also psyches himself out during difficult times when he is having health or medical issues and almost lies to himself so he doesn't get depressed about it.
But all of those things, along with the fact that he's had 27 years to 'accept' his disability, is tearing us apart. He thinks I am just giving up when I can't do something and is constantly saying how I should just 'push through things'. He can't see my everyday symptoms like he did when I had an exacerbation and that makes it even harder.
All I want is for him to let me go through the process of grieving and healing and adjusting to all of this. I also want him to accept that I am not him and that it's OK for this to be difficult and scary and everything in between right now. I feel so alone. Am I the only one who WAS the caregiver and now NEEDS a caregiver? Am I the only one who has a disabled spouse and am now disabled myself? I definitely feel like it sometimes and I don't know where to turn.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
I was just diagnosed with MS in June and am not doing well. We are both emotionally drained from fighting because he is having a hard time understanding what it's like for me to have been healthy for 25 years and just now be diagnosed with a chronic disease. He is very strong-willed, believes he can do anything he puts his mind to, does not let his disability put him down or limit him, and always pushes through things no matter how tough. He also psyches himself out during difficult times when he is having health or medical issues and almost lies to himself so he doesn't get depressed about it.
But all of those things, along with the fact that he's had 27 years to 'accept' his disability, is tearing us apart. He thinks I am just giving up when I can't do something and is constantly saying how I should just 'push through things'. He can't see my everyday symptoms like he did when I had an exacerbation and that makes it even harder.
All I want is for him to let me go through the process of grieving and healing and adjusting to all of this. I also want him to accept that I am not him and that it's OK for this to be difficult and scary and everything in between right now. I feel so alone. Am I the only one who WAS the caregiver and now NEEDS a caregiver? Am I the only one who has a disabled spouse and am now disabled myself? I definitely feel like it sometimes and I don't know where to turn.
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
Comment