Hello, welcome to the forum
I'm 24, I was diagnosed as having Crohns when I was 19 after 5 years of battling for a diagnosis, and have a host of other illnesses as well. I have been with my partner Gareth for 5 and a half years and got engaged in June. He has never known me well.
Crohns is a cruel illness, you think you have it beat and it comes back and pulls you right back down, that's physically and mentally exhausting for anyone. It can be so easy to slip into depression and to isolate from those around you. I find it tiring to even hold a conversation at times, and so can struggle to keep an active part in my relationships with my fiance and other family members.
I live with my parents at the moment, and I must admit I don't do a huge amount around the house. I do my own laundry, I change my bedding, I help with dinner occasionally and thats about it. I rarely do any of the cleaning (although mum often says she doesn't want me to because she think it would be too much for me) and I don't do any of the shopping etc because I can't drive which is basically essential where I live.
To many, it would look like I sit around doing nothing all day long, and I often struggle with this idea myself. I was/am an ambitious, hard working person. I passed my school exams with flying colours, and got high grades at college despite having horrendous stomach pain (so bad I was leaning on radiators to get the heat on my tummy). I even started a nursing degree in university, but had to leave because I couldn't get the strength to attend lectures. Its incredibly disheartening to go from making the footsteps into a long and well respected career to suddenly sitting around at home with barely the strength to get dressed most of the time. I'm still unable to work now, and its one of the things that gets to me the most out of everything these illnesses throw at me.
Having a chronic illness like this, especially if it stops you working, can really strip away your identity. It can make it feel as though all you are is a "sick person", you feel like you don't contribute anything to your loved ones, and it can make you feel invisible at times. You become scared that everything you do will make things worse or add to the burdens of those around you and so it's easy to just give up trying. It could be that your husband is struggling to figure out what hes supposed to do, its hard to work out what your place in the world is when you spend most of your time at home by yourself.
Over time, many of us start to find a "new normal", a way to function in our new world and a way to feel like we are still having some sort of life, for me, I sketch. I love being creative and it really helps me focus on something other than my illness, but some find it much harder to adapt or find a purpose and can sink into a routine of not really doing anything or making any effort.
For some, the feeling of not achieving anything or not having any purpose, can leak into having no self worth, this is definitely something I've struggled with in the past. This then can lead to not making effort in our relationships or not looking after ourselves. It can be really hard to keep trying to make things better when you know you're facing an illness that wont ever be 100% fixed, and some struggle to see a point in trying to recover if its just going to keep coming back.
Could it be that your husband thinks you'd actually be better off without him? It's really common for people with illnesses like this to think that they are a big burden on those around them, and sometimes we try to push those people away because we really think they'd be better off with someone else. I know that I've struggled with this myself in the past and still do sometimes. My partner is clever and ambitious, he could go really far in life, but instead he's chosen to get a job near me and spend his life with me, and on my really down days, I struggle to see why he would want me.
You could try having an open conversation with your husband, perhaps not directly about the chores to begin with (that could feel like an attack if hes already in a low mindset). Tell him your concerned about him and would like to know how he's feeling, remind him that you love him and that you will never leave him because of his illness. Remind him of the things you love about him, and maybe try to open a conversation about some of the things you miss doing together. I'd try to start with something pretty simple that doesn't rely on him feeling well , like cuddling up and watching a film together or maybe making something together if he's creative. Perhaps ask him what he misses being able to do, and then you could maybe sit down together and work out a way to make that activity more accessible for him.
I can't comment too much on the chores as I don't know his individual abilities or the layout of your home although I would say that he should at least be able to clear up his own rubbish provided the bins are well placed. I assume he makes himself lunches while you're in work? perhaps when he does that he could prep a little veg or something if its not too tiring for him?
As for the disability aspect, I can understand it must be hard for you financially. I don't know how it works in the US, but in the UK we have something called ESA. I currently get this because I'm classed as being independent (my parent's earnings aren't taken into consideration) but when I move in with my fiance, I will stop being classed as independent, and if he is working full time then I won't be able to claim any help (despite a minimum wage not being enough to live on) . I'm not sure how they look at household income where you are, but it might be you have a limited claim because of your earnings. I can also understand your husband being reluctant to claim. Again I don't know what its like where you are, but its really stressful here, the process is long and complicated, and they often turn people down even though they are very clearly not well enough to work. We have had cases where people have been turned down despite having terminal illnesses.
It can also be a degrading experience, you're asked a lot of very personal and invading questions, which can leave you feeling exposed and often judged. It's really quite hard trying to prove to the assessors that you're sick and unable to take care of yourself in a financial way. As I mentioned earlier, I've always been ambitious and really quite independent, so it was really hard for me to accept that I needed to rely on the government for money to get to appointments etc. I've always been taught to work for my money and to look after myself in every aspect possible so this is very alien to me. It was actually an employer who eventually persuaded me to get help, I'd only been working there 2 months and she told me very clearly I was far too sick to work, and convinced me that applying for help was not weak and did not make me lazy or a scrounger (a lot of people in the UK see claiming benefits as lazy). She let me go on compassionate grounds, and I managed to get my claim sorted out without too many issues. Is there an advice service you could maybe go to which would help to explain the process and help your husband understand that its OK to seek help? Sometimes its the not knowing what will happen that can put people off trying.
I hope this is somewhat helpful, I'm sorry its ended up so long. Please don't think you can't share your feelings, of course people have a different point of view, but it is hard on family and loved ones, which not everyone understands. I know my partner struggles but we have a healthy relationship and I do everything I can to try not to let him feel like a carer or like he can't be his own person. It may be that your husband wants to do this for you but doesn't know where to begin. Please continue to reach out here, we will do our best to support you and try to empathise with you, if your husband would benefit from talking to people who are in a similar situation to him then maybe you could get him to come have a chat too. My inbox is always open should you need anything.
.) He is an incredible person and i don’t want to be with anyone else! I do want our life to be the best it can though so this is an attempt to try to get us both on the the up and up!
