The question of having support is often asked in the doctor's office, and I feel like I've been programmed to answer it how everyone wants it to be answered. "Yes, I have support at home". A lot of the time this disease makes you (or me) feel very a lone. The truth is you don't really want to talk to people about how you're feeling or your specific symptoms and since we don't LOOK sick people may take that for granted. It sometimes feels like a lose lose situation. If you tell them what you're experiencing, it may make them feel awkward or push them away. But if you don't tell them how you're feeling, you might have animosity towards them for not being sympathetic to you.
It took me about 2 years to finally be diagnosed and begin treatment for UC. I believe this was mainly because of hte uncomfortableness of speaking about the symptoms. Every time I would say I felt sick to my stomach my parents thought I was trying to get out of a test at school or a chore at home, when in reality I really hurt and didn't feel well. Next came the mucus in the toilet. Talking to family members about this was really embarrassing, which made me not want to talk to anyone about this. I mentioned something to my GYN who didn't seem too concerned and said they would need a sample to determine what it is. Well, to someone who hadn't dealt with anything like this before, asking for a sample of anything that goes in the toilet is really weird and uncomfortable. I let it go and decided it wasn't important if no one was immediately responding to my symptoms. I finally got someone to give me some attention when I forced my dad to come into the bathroom to look in the toilet. At this point I was having both mucus and blood. He told me I need to go to the doctor when we get home (we were out of town).
When I say support, I also relate this to people acknowledging your symptoms and what you are saying. I didn't feel supported in my illness until I had people recognize something was actually wrong. Up until this point everyone was brushing me and my symptoms off for a multitude of reasons which made me feel like I wasn't really having a problem. Even when I went to the doctor's finally for this specific issue the doctor I saw that day seemed to ignore me as well, brushing it off as female related cramps or a stomach virus, the same things I had heard so many times before. I was having so much pain at this point, that I wasn't going to accept her opinion and scheduled another appointment with a different doctor and thank goodness I did!
I saw a physicians assistant who seemed to know what they were doing, as she asked me a lot of questions, pushed on my stomach in a few places and came to a conclusion which of course she wouldn't tell me. She did say that I needed to go see a specialist, a Gastroenterologist, ASAP. She actually went out herself and walked down the hallway to schedule the appointment herself. My first appointment was with the Physician's Assistant for the only GI in the zip code. He saw me the very next day and after a few tests diagnosed me with UC. I met with the GI and very quickly had my first colonoscopy scheduled. I felt validated. That may sound strange and like I was waiting for pity and for people to feel sorry for me but that isn't it. I wanted to feel supported. I might feel terrible and be experiencing blood every time I used the bathroom, but I would have felt better about it if someone would have acknowledged these symptoms as being real concerns and being concerned for me and my health. If you want to call it self-pity, then that's okay I guess.
Throughout my struggles with UC, I have felt very much alone with support from a few people. My mother was always very supportive, taking care of me when I was first diagnosed and very sick. She stuck with me while we were trying every different pill under the sun and as I was struggling with the side effects of the huge amount of prednisone I was on. I had a few friends who stuck with me through my struggles and always tried to make me feel better and not looking at me differently even though I had lost a huge amount of weight and was tired after walking to the car. But, after time I think it gets old for the people supporting you. It gets annoying I'm sure and people want to be ACTIVE. Why would someone who's fully capable of doing anything they want, choose to hang out with someone who wants to nap every few hours? Sounds dull to me.
When I met my husband I had started on my Remicaid adventure and was pretty much in remission. I explained the whole condition to him and he said he understood but without experiencing it, I'm sure it is hard to understand what exactly sever ulcerative colitis is. We are 7+ years down the road and I am out of remission, playing "musical medicine" and feeling terrible all over again. I haven't hit such a low such as when I was first diagnosed but I do feel pretty crappy (pun fully intended). I feel like I've gone through this experience pretty much alone because I had moved away a year after I was diagnosed leaving my parents and all friends 12 hours behind me. I didn't want to tell the new people I met about this and wanted to live in remission and forget about it for a while (other than every 8 weeks going to get the infusion). My work just thought I went to the doctor's frequently and never really questioned it, and I never clarified. I went to infusions, appointments and flexible sigmoidoscopies by myself and I had accepted that.
But now, being married, I had hoped for more. I wanted some attention and some recognition that I'M EXHAUSTED every second of every day. I plan my entire days around how I could possibly catch another nap. With a 2 year old son and 10 year old step daughter any normal person would feel tired as well. I completed my 4 year degree this past December which included a 2 hour commute each way to campus, and SURPRISE a month into school I found out I was pregnant. Next, I found a job over an hour away so now I have the commute, work, kids, dogs, husband, house, self, and active colitis. I feel like I'm run over by a truck almost daily. Hearing my husband come home and say he's tired and not contributing to the house chores makes me angry. I feel like he should be doing MORE than me to be supportive. This may not be realistic, but feelings and opinions cannot be changed immediately. I feel like supporting someone with this disease should include helping them in any way possible. Yes, I can still clean up and watch the kids but it would be nice for someone other than myself to mow the yard and clean the house once in a while. I would like people to call and ask me, and actually be concerned as to how I am feeling/doing. I want my husband to rub my back knowing it kills me everyday without being asked. I would like a day of sleeping in all day to catch up on my rest instead of being expected to cater to everyone else's needs. I want my family to come visit ME instead of me having to go visit them constantly.
I just want to feel S U P P O R T E D
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