Someone once told me that losing friends to chronic illness or disability was not a thing, and if I felt alone it was all my fault.
Words failed me.
Years later, I have a better response. It struck me that this is what people don’t understand about chronic illness or disability. In their lives, if you get a horrible virus your friends jump in. They help ferry your kids around, help with your laundry, or maybe they’ll bring you dinner. You might have to stay home from work a day or two, but pretty soon you’re back on your feet. If you have a wide social circle your needs will be met until you feel better. Then your life gets back to normal.
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Losing friends to chronic illness or disability
When you have chronic illness your life never gets back to normal, and most people don’t have the patience or the time for that. At first, your friends and family are as helpful as they can be while they are waiting for you to get better. When that doesn’t happen people react in different ways:
1) Blame the sick person- This is the “if you would just try harder “or the “if you would just have a better attitude” phenomenon. People like to think that you can work your way out of an illness because it helps them to feel more secure. That way they know it won’t ever happen to them and they can pretend they have total control over their own life.
2) Denial- This is the “there is nothing wrong with you a good (insert expensive treatment here) wouldn’t cure” or the “you are just faking this for attention” belief. These people are happier living in a world where they can deny that bad things happen to good people, so they look for excuses to explain the situation. It’s all based on fear.
People who think you're faking your chronic illness for attention are afraid. They don't want to live in a world where bad things happen to good people, so they look for excuses. Click To Tweet3) Avoidance- This involves wonderful people who are sympathetic and want to help but are scared by the situation. They disappear because they don’t know how to handle things the right way. This is an understandable reaction because so many of us don’t know what to say to someone who is suffering. It feels like words are not enough, and as a result many people just don’t say anything. I myself am totally guilty of this one.
4) Abandonment- This involves people who use their fear as an excuse to end their relationship with you. They excuse their abandonment by comforting themselves that you are depressing to be around and are a negative person. After all nobody wants to be around someone who talks about themselves and their problems all the time. They tell themselves it’s best to sever such a toxic relationship.
5) Love and acceptance- These are the magnificent people who feel for your situation and who are there for you every step of the way. They are rare but they do exist and are a reminder that there are truly good people in this world.
I have experienced relationships with people in every one of these categories. I have figured out who my real friends are in all this and am also lucky enough to have a supportive family. And yet, there are times when I’m left alone. Healthy people want healthy friends. They want friends they can regularly rely on. They want friends whose lives are not regulated by pain, medication, exhaustion, sleep patterns, and doctor’s appointments. I understand that.
Very few people can see past these barriers to practice love and acceptance. This means I love and appreciate everyone in my life that has managed to do this, I don’t know what I’d do without them.
First of all I thank you so much for this topic. It’s one I struggle with. I’ve tried to explain to my family, I don’t have anymore friends in my personal life! I’ve been dumped! My only “ real” friend I had for several years who really “ saw” me, and I mean at my worst possible physical pain days, would hold me while I cried like a child because I couldn’t get out of pain, told me I was a beautiful woman on the few days I was able to fix myself up a bit, and bought me a car with back pay when the car my ex husband bought me was on its last leg. Did I mention I had told my ex I didn’t want the car from the man I wouldn’t buy a lawnmower from and the car died two days later? Or that we had to dump $ 2000 more into said car on a rebuilt motor?
Anyway, back to “ friends “. My best guy friend, the one who has always been there for me, and me for him, real friends, died on Wednesday. Cancer. My other friend who used to call me every week and monopolize the conversation and exhaust me stopped calling. My pain was too much for her she texted me.
Now, to be blunt. I have been married and divorced x3. Not that I’m into divorce. My parents were married 30 years until my Dad died. Faithful. My son and daughter in law have a beautiful marriage. I taught my son how to treat women.
No. I’ve been thrown away x 3 as I was told I’m a burden due to my pain.
Now keep in mind, I still raised a son, cooked nightly, washed clothes, up until 1994 I worked. So, the last two idiots already knew I was disabled and the very last one allowed my step daughter to hit me to the point State Troopers and State Police had to be called. Finally he gave me money and a U haul 2 days before Christmas in 2007. I set out from MI to TX no problem. See ya.
My point is. I’ve made friends online who get me better than people in person because we’re in mostly the same situation. We’re right in front of our loved ones, or friends, but we’re not seen.
I thank you for reading this. Really. With my whole heart. I also thank you for a soft place for a 61 year old woman , living alone, who doesn’t want to live alone, and still hopes for more.
God Bless You All.
Gentle hugs and love. ??
Lisa, I’m so sorry to hear all that you’ve been through, and that your amazing friend died. It says a lot about him that he was there for you through it all. You’re right that are loved ones don’t always see us, and it’s those who know what we’re going through that often hold us up.
I felt so angry and so sad at the same time reading this. I think you’ve voiced something many of us with chronic illness will sadly be able to nod along to. I’ve actually got no friends ‘IRL’ anymore. I don’t mean that to sound like a cry for a pity-party, it’s just a statement ? I’ve had far too many one way streets with relationships, where I’m a convenience when people need something and then they’re gone. Others have simply walked away, and on two occasions now it’s happened where those people have pushed me into a corner and asked outright ‘what’s wrong with me’ because I hold back on talking about myself. I regretted disclosing my health issues both times because both times those people walked away.
I’m sorry you know what it’s like looking around and realising you’re on your own, but I hope you can take some comfort in your supportive family. I also think the online chronic illness community can be, for the most part, incredible and such a blessing. I count you as a friend, and please know I’m always here if ever you want to chat, vent, or anything else. Thank you for writing this, it’s not an easy subject to cover ♥
Caz xx
Thanks for your lovely comment! I’m totally here for you as well, I love hearing from you. I’m with you regarding the online community. It has kept me afloat as friends have slowly dropped by the wayside. I can’t imagine how hard it would be to go through this without being able to communicate without other going through the same thing.
This post is so accurate. I’m almost embarrassed to say that away from social media, I don’t really have friends. My “friends” are really just acquaintances. I’d also include some family members in that. When you’re living with chronic illness or pain of any type, you don’t quite fit in because your life is different. But like you say, if a healthy person gets sick, everyone would rally round. But when that sickness is longterm, as in forever, they soon forget.
All I can say is thank goodness for social media. It would be a lonelier life without it.
Same. I can’t imagine what being sick was like in the days before social media.
Hello my friends, I am a 68 yr. old woman who has had 2 amazing careers, have lived in 3 beautiful states and have had 2 divorces behind me. I was raised by 2 alcoholic parents and both of my ex-husbands displayed domestic violence tendencies towards me. By personal choice, I have no children, . I have one half brother whom I never knew . I have an older sister, by 7 years, who has spent her entire life bullying me, judging me, belittling me, criticizing me, and insulting me. As much as I can remember, she always treated my parents the same way! The last year that I worked at gainful employment was 2005. Prior to that, I was diagnosed in 1999 with Fibro, anxiety and PTSD. My symptoms just increased very slowly, every few months. The most frustrating thing that I had to deal with was the fact that I had to become my own advocate!! In 2002, after I sent my last husband home to his Mom, I had to face a terrifying future! I could not work anymore, I lost my apartment and ended up renting a room out from different stranger’s homes for over 6 years, until my disability kicked in. I had lost both parents in 1987 and I knew better than to try to contact my narcissistic, snobbish sister. Since I was assaulted, in 1971, she decided that I was a bad influence to her kids, and now, even to their own children! I have been forbidden to be in their lives at all! Don’t get me wrong, my sis has helped me out a couple of times financially, but always with a BIG price to pay. She would make it a point to tell me that I owed her, big time, along with telling me how ungrateful I am. A big emotional price, I mean. Her love is conditional, NOT unconditional. This crap is all about the dynamics of an alcoholic upbringing, I understand that now. I am just giving you a foundation of deep rooted feelings of abandonment and rejection which has been a part of a lot of people in this world. I am truly sorry for all of you who were affected in this way! Over the past 20 + years, I have been tossed around to many doctors, pnm, pcp’s and neurologists, in Southern California. I can count, on one hand, the ones who to this day, I truly respect, as a result of their honesty, their ability to truly listen to me, and to the fact that they have always believed what I was saying to them. I am not a perfect person, but living with constant spasms all over my body, which burn and pinch, experiencing 3 to 5 migraines a week, daily fears of exacerbation of my interstitial cystitis just to name a few, have all taken a toll on my emotions. Medications and disease have taken a toll on my brain! I have HAD to learn to say NO to others. FMS is a stress sensitive condition which drives the sympathetic NS continuously. This is an intractable, chronic disease which to me, means the same as fatale. I would like to hear others opinions on that statement. It is a nervous system and a connective tissue disease. I am a very giving person, sometimes thinking of others needs before my own, but since that usually got me no where, I don’t do it anymore. It is hard for me to have good boundries, but over the years it is getting easier to do. I recently reconnected with a lady who was my neighbor in 1970. She commented to me that she believes a person can over come any illness or disease by making themselves well! Over the course of about 5 weeks, her emails were very insulting to me and I felt constantly lectured from her. As a result, I told her I was not interested in continuing a friendship anymore, and the reasons why. We risk losing a person by stating our feelings BUT, so what! Sometimes doing so, can save your life, emotionally!! I love music and singing, along with going to the ocean with my service dog. Everything is a miracle to me, and I value a couple of people in my lives who are real friends! I keep myself well educated with an open mind to new treatments or medications. There is a blood test to confirm FMS. I had mine taken from a company called Epic /Genetics, out of LA. they are working on a vaccine , but it takes time and money. I would like to do a WALK for FMS, but I don’t know how to get sponsors, etc. To all who suffer, a big hug and I support you, Sincerely, LM