Forming meaningful bonds with others and investing time and energy into those relationships to ensure that they last is difficult; even for those without any health problems. I have seen many people come and go during my journey through health battles. When I was initially diagnosed with Inflammatory Bowel Disease in 2007, I noticed who didn’t come to see me during my 6-week hospital stay. I noticed who sent me texts and who seemed like they actually cared. There wasn’t many of them!
When I left the hospital and began my long recovery from stoma surgery at home, I noticed that very few people wanted to come and see me, and to find out how I was doing. Most of the people in my life at the time had been people I worked with and people I went to the pub with at the weekend. If I wasn’t at work or going to the pub, then they were nowhere to be seen.
I did actually have a couple of people that I hadn’t spoken to for a long time contact me and wish me well. I never did figure out if those people wanted to be in my life, or whether they were just being nosy. I wasn’t looking for new friends at the time, so I accepted the well wishes with thanks and that was the end of that.
My health declining so rapidly and needing emergency surgery to form a stoma had scared me. Complications post-surgery had meant that I had been face to face with my own mortality, and it made me re-evaluate my life.
When my health improved, the people I used to go out and socialise with popped back up. I thought long and hard about what kind of relationships I wanted going forward, and people that only wanted me for certain activities were not on my “keep” list.
I have made new friends and drifted away from them over and over since, but that has generally been due to the pace of life, changing jobs etc. I have been careful about who I choose to spend time with, but I’m only human, so sometimes it turns out that I chose wrong. I try to learn from each experience I have with relationships, and find something positive that it has taught me – even if that is what I am not willing to put up with!
I won’t pretend that failed friendships and romantic relationships have always been easy to accept, especially when part of that failure has been because of my limitations, or their lack of understanding. I HAVE cried because people have made me feel like a moaner, a let-down, or just plain lazy. I have felt an overwhelming amount of guilt because I am not able to do things, or I’ve had to cancel plans. I have sat and questioned whether simply being me is not good enough. Again, I am only human!
The thing I always have to remind myself is that I am doing my best. I’m not angry with anyone that I am no longer friends with. They can’t help how they are any more than I can help how I am. Sometimes people and lifestyles just don’t go together. I am making the best of what I have within my limits, which does mean that I can’t always do everything I want to do, when I want to do it.
I appreciate that it is difficult for people to understand a lot of what I go through with my health, simply because they haven’t experienced it. I have some really wonderful people in my life, who I barely ever see in person because we met online, through Facebook support groups liked #IBDSuperHeroes. The ease of a conversation with someone who just understands a situation or feeling because they have been through similar is priceless.
To me, friends are people that have time for you. They like spending time in your company, and they care how you are. They don’t make you feel guilty for not replying to a message for a few days, and they don’t put pressure on you to do things that you can’t or don’t want to do. Friends are the people that are happy to do nothing with you when you’re not able to do more!
Sahara was admitted to hospital and diagnosed with Ulcerative Colitis at the age of 19, after just two weeks of being incredibly unwell. One week later, she had emergency surgery to remove her colon and rectum, and had her first ileostomy. A turbulent journey followed; a multitude of treatments, complications, seven surgeries, a failed J-Pouch, and three ileostomies later, she is living with a permanent stoma and is a pro-active IBD and ostomy advocate.
Sahara joined the online IBD and ostomy community in 2014, and it very quickly became apparent to her that whilst awareness is important, even more important than that is providing support to others as they navigate the stormy waters of life with IBD, or an ostomy.
She runs #IBDSuperHeroes fundraising and awareness campaign, and the Facebook support group. She is a blogger for InflammatortyBowelDisease.net and an IBD Patient Consultant for merakoi – bridging the gap between patients and healthcare. She gets involved with research whenever she can, and is a volunteer for Cure Crohn’s Colitis, where she donates her time and expertise in social media marketing and content creation.