Happy Sunday all my lovely readers! I know it has been longer than I anticipated between my last post and this one, I’m sorry! So quick update, I’m now three doses into my Humira (noticing small changes which is very good!), I’m still on the new steroid medication and it seems to be helping as well, and this week I go back to Toronto for two appointments. The first appointment is with my immunologist at St. Michael’s Hospital, he will discuss the plan for treatment of my mast cell activation syndrome, the medications he put me on last time I saw him have made a difference so we will see what he wants to do. Then we go to Sunnybrook where I will meet with a dermatologist who specializes in treating hyper mobility. I have issues with my feet and joints, as well as, some other concerns so we’ll see what he thinks and go from there! I’ll update about my appointments and their outcomes later this week. Since my appointments are downtown, I will stay with my Mom and Dad overnight. Wednesday will be busy and stressful but my Mom is amazing and I know she will help me through it.
Today, I want to write about a big topic that is personal and somewhat emotional. I want to discuss friendships, chronic illness and the impact that they have on each other. Throughout my time being sick, I have had to learn to accept many things and find ways to move on and not let them effect me too much. This can be a challenge as it’s not always so easy to forgive/accept and forget but it’s especially important for someone with chronic illness to figure out how to do this because of the impact it can have on your health and your diseases/conditions.
Part of dealing with chronic illnesses involves building a strong tribe of people who you know will have your back no matter what. This tribe of people, your people, can consist of family, friends, neighbours, etc. No two tribes are the same and there is no one size fits all. Some may not have family that support them so their tribe consists of friends, some may have a mixture of family and friends, etc., the whole point is that these are people who will support you, love you and carry you through, even on your worst days. So I have my tribe and it consists of many different supportive people (including friends I made after I met Ryan, thanks for checking on me not once but twice while in hospital Ash!) but I can say it does not consist of the people who I believed at the beginning of my illness would always be there. Chronic illness takes a lot of things away from you, including your independence, your ability to make plans in advance, your ability to go out in public, and the list goes on. I cannot make plans weeks in advance, a lot of times I have to cancel the night before or the day of and I’m immunocompromised so I have to be cautious of who I’m out with and the people that I’m around. Usually, due to these limitations, people slowly drift out of your life. Your friends no longer bother to invite you anywhere, you see your friends making plans and going out together and you are no longer included at all. I can tell you, it hurts, a lot. It’s not my fault that I got sick, it’s not my fault that my days can be unpredictable, it’s not my fault that I can no longer drive. This is my life now, it will probably be my life for a very long time but it really sucks when people completely cut you off, especially when it involves people who you thought you knew and who you believed were better than that. I’m working on getting passed this issue, it isn’t easy, and it never will be. I can say that I have made progress and it eventually starts to hurt a little less.
So, with that being said, I’d like to talk about the friendships I have formed BECAUSE of my chronic illnesses. The first person I met is my friend Ashley, I was put in touch with her by a lovely lady that I went to Nursing school with (thanks Heather!) and I am so grateful that I “met” her. Ashley has a lot of the same health issues as I do and she was so amazing right from the first day we started talking. She let me ask her a billion questions, I explained my symptoms and she listened, offered advice and just related to me. We’ve been in touch ever since, getting each other through some tough times and also sharing in good times as well. We haven’t met face to face yet but it will happen, guaranteed! Ashley, you are a wonderful, caring, and loving best friend and I am so lucky that we connected with each other. I admire your strength and perseverance during difficult times and you inspire me to always keep fighting.
Then I met Amber, we connected through a chronic illness support group on Facebook. Amber is another friend that I have not met face to face but again, it’s just a matter of time and being healthy! Amber and I connected over our passion for Nursing and our heartbreak of having to leave our careers in order to care for ourselves. To say that finding someone so similar to me is awesome is a total understatement. I often joke that I am the Canadian version of Amber and she is the American version of me! Amber, thank you for always being there when I need to talk, or cry, or vent; I know that I can talk to you without judgement and with complete understanding from you. You are a wonderful Mom, wife, daughter, sister, and friend. I am so lucky to call you one of my best friends.
Another very important person to me is a colleague that was on the same line as me at work. She also became sick shortly after I left work; she is an absolutely incredible human being. She was someone that I looked up to frequently at work and even now when I can turn to her for understanding and advice through our journey with illness. I hope you know who you are, I am so grateful for you and our Facebook chats!
There are also the many amazing people that I have connected with through social media. Through Facebook support groups I have met some wonderful people who are so supportive and willing to help. A few I have added to my friends list who are always willing to chat online. Through Instagram I have connected with chronic illness patients from Canada, the US, Europe, etc. It amazes me that thanks to social media I can talk to someone half way around the world about the same disease that we both have and the support is absolutely one of a kind. I recently joked with my friend from the UK that having chronic illness friends in different time zones means that we all have 24/7 support! Of course there is my friend Sarah from Instagram who I wrote about in a previous blog post. She is one tough lady and I’m so glad to know her and to have the privilege of her sharing her extensive knowledge with me. Sarah, if you’re reading this please know that you are an inspiration to me. The battles you go through are pure hell but you go through it with such grace and bravery. Also through Instagram, I met Mara who is many things, including an actor, a model, an advocate and a survivor. Mara you are one inspiring lady and you are funny as hell! The work you do and the awareness you work so hard to share is inspiring. Thank you for always knowing when I need a big laugh and some sort of sweary intervention because sometimes you just need to give it the middle finger and move on!
Well, there it is chronic illness and friendship, it’s not easy, none of this stuff has been easy but I know who my people are and that’s what matters. Also, please know that if I didn’t mention you specifically in my post, it does not mean that I value our friendship any less. There are so many people that I have connected with and learned from and I would never take that for granted. You have all made an impact and I’m lucky to call you my friends.
As I said, I’ll get a new blog post up after my appointments later this week and I’m thinking I’ll combine that with the topic of chronic illness and family. Thanks again for reading. I hope you all enjoy the spring like weather that has moved in and hopefully it’s here to stay!
Wishing You All Health & Happiness,