PIP and IBD ostomies ileostomy

Separating you as a patient from you as a person

This has been playing on my mind recently and I thought I’d get it down here to see what other people thought, how do you separate you as a patient from you as a person?

When you have a chronic illness, you spend a lot of time as a ‘patient’, from the endless doctor, nurse and hospital appointments to taking medication every day. When you have to consider your health on a daily basis it’s easy to feel like the you that is a patient has taken over the rest of your life.

I suppose I’ve been thinking about it as I’m recovering from an operation and I have been in full patient mode for a couple of weeks. I’ve been taking pain medication, sleeping and resting a lot and needed the care and support of family and friends much more than usual.

All my phone calls and visits have revolved around me, how I feel, how I’m recovering, if I need help. This has been so lovely and the thoughts, support and well wishes have been so heart warming. But it also temporarily changes your relationship with people.

So as I start to feel better and begin to step out of full time patient mode, it feels a little odd to be honest. Is it just me or has anyone else felt this?

Stomach bug and ostomy

My body has been in pain, I’m healing from the op and my husband has been my nurse during this time. He’s obviously seen me naked, but these times have been when he helps me in the bath, sits with me as I change dressings and my ostomy bag and when I’ve been in bed.

Then tonight as he leant over to hug me in bed, I felt myself freeze, I suddenly felt self conscious of my body when I thought about it in a normal way, though he’s seen me nude every day for 2 weeks, the idea of him looking at me with a husbands eyes rather than a nurse or caters eyes made me feel a bit embarrassed.

Its an odd feeling as I’m never usually conscious of my body, and this one tiny new scar has nothing on the other huge scars and my permanent ileostomy. I know he loves me however I look, but stepping out of patient me’s shoes back into every day me felt a little jarring.

I think it’s easy to forget who you are when you are always ill, but it is so important to take time to remember that your illness is just a small part of who you are, it doesn’t define you and shouldn’t be the biggest part of you.

I’d love to hear what you think about this, is it something that bothers you? Do you understand where I’m coming from? Let me know your experiences as I’m a nosy bat and I’d like to know if I’m alone in these feelings!

 

Love Sam xx

3 replies
  1. Sally Stinton
    Sally Stinton says:

    Hi Sam, I totally get were your coming from, I have a long term chronic health issue, I have fibromyalgia and degenerative disc disease throughout my spine, I also have IBS and bile acid malabsorbtion, so understand the toilet issues etc, it is very difficult to have two personas; ie me the patient and me the person. I’m lucky I have a fantastic hubby and fantastic kids, do you ever get days were you just want to be normal?. I know I do, let me share something with you,
    My son is getting married in August fantastic, thrilled, over the fecking moon, BUT…..here we go, “mom we have asked the caterers to provide a slight change with your food so as it won’t upset your belly”, that’s great thank you for being so considerate says I, Fabulous my son is being so thoughtful and wants me to enjoy the day, ( me feeling like a patient) (just want to blend in and be normal). Wedding venue, “we have a cracking venue mom, we will be able to take your chair and special cushion so hopefully your back won’t cause you too much pain” again fantastic thoughtful son looking after my well being and I am extremely gratefull however again I feel like the patient when all I want to do is blend in and be normal. It’s tough to try and maintain a balance I accept that at times I will need to be cared for , however on good days I push through the pain to try to be normal me……. I also get the kindness people show, with my close friends and family when they call or ring to see how I am I say fine and they say really or are you telling lies, my reply is always “make me smile and make me laugh, and I will feel so much better than telling you how I feel” and this they do which is fantastic, because I guess like you I have many careing friends and family so the phone calls are plenty, however having to tell my lovelies how I feel repeated (7 calls in a day) is quit depressing, my day starts pretty well and by the end of it I feel a little low and think bloody he’ll I’ve been through some shit lately. Again feeling like the patient, but when the calls make me smile and laugh it feels like the “normal me……OMG I hope I haven’t waffles on to much, …..Sam you and I and many others alike will keep putting one foot in front of the other and make everyday count, your a real inspiration to many so keep on blogging and kicking ass x x

    Reply
  2. Chelsea Huff
    Chelsea Huff says:

    Yes! So much and all of this-yes! I just had my surgery 3 months ago, 10 years dealing with ulcerative colitis, it was emergency surgery, almost died…big thing. My husband and I have been together 18 years, I’m 36 years old. We have 3 kids, he’s ‘seen’ me. But now he’s seen me sick. Has had tho help me in ways I never wanted help with. My close friends have seen me sick and needy which is embarrassing to me, plus my kids too. It’s hard. And weird. And frustrating. I try to focus on how lucky I am, it’s easier some days than others. Thank you for writing!! It’s good to know I’m not alone.

    Reply
  3. jayne parkes
    jayne parkes says:

    Hi Sam. I cannot totally identify with this. Apart from when I need care when I am the “patient”, I have now become quite self conscious about my body in front of my husband. Also, and I hate myself for this, I have got quite used to the extra attention over the years. My husband is the best “carer” in the world, but during the times when I am well, he becomes I suppose the normal man, and obviously not quite so attentive…..and do you know what, I miss that extra love and support. With friends and family, I do sometimes think my identity is my illness. I never realised having chronic illnesses would mess about with me as a person…..I feel invisible unless I am ill…x

    Reply

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