The Isolating Effect of Chronic Illness

Many people mention several negatives, side effects and draw backs of Chronic Illness. The one I find most often overlooked, both by professional literature and anecdotal evidence is the severe isolation and loneliness that can come with being sick. We are treated as less than equals because of our disability in so many ways. We need social interaction just as much, if not more than able-bodied/neurotypical/healthy people.

So often I don’t get invited somewhere and hear “We didn’t think you would be able to go or want to go, so we didn’t invite you.” You’re then left trying to explain, often in tears, that you do indeed WANT to go out with them, but you aren’t always ABLE to. I know that I, like most other chronic illness patients I’ve spoken to, would rather be invited and then have to decline, than not be invited at all. I know I feel so excluded and isolated when people don’t invite me.

The other part of isolation that occurs with a chronic illness is being made to brave the medical and social system alone. For most people, when they have a doctors appointment for something serious or they go to the emergency room, there are people that rush to be at their side. When you have a chronic illness, people stop caring after a while and/or can’t be bothered to make the effort. For me, this happened a few weeks ago. I was still at college and the residence director for my building saw me sitting in the lobby and was making sure I was alright. I had been extremely lightheaded (too much so to stand) and unsteady on my feet. I laid myself down on the floor and told him what I was doing as I knew a seizure was coming on. He called an ambulance for me and I was transported to the hospital. I texted my mom from the ER and told her I was there. She just said, “Okay, call me when you’re home.” My parents live 25 minutes from the hospital and it’s not as if the weather was bad. I was furious. There was no reason for me to lay in the ER for 6 hours alone just because my mom didn’t want to once again deal with it. I knew I was just dehydrated and had low blood pressure but I still didn’t like being alone. NO ONE wants to be made to go for tests/lab work alone, let alone be in the hospital alone. Unfortunately, the reality for so many of us is, we don’t have family or friends at all or we simply don’t have anyone who cares. Often, those family and friends we do have think that we are faking. I know I’ve heard it.

In short, think twice before excluding/ignoring friends and family with chronic illness. We need the love and attention just as much, if not more so than other people. Chronic illness by it’s nature is incredibly isolating. Don’t not invite us because we often cancel or say no, or because YOU think we can’t handle us. Let us be the judge of that.

Treat people with disabilities/illnesses the same way you would treat anyone else.

As always love and spoons,

J.

“What do you need from me?”Dating and Finding Love While Sick

I recently met someone new, Wesley. We chatted for a few weeks after meeting online (Thanks Tinder!). While we were talking I mentioned the reason my last relationship ended was that I wasn’t getting enough attention. That makes me sound needy but in reality I was getting a text message every 3-4 days and I had seen him once, for 10 minutes, in 6 months. I needed more.

Wesley asked what I needed from him in a relationships besides the basics like love, affection, and attention. At first I was thinking, ” That’s all I really need.” and I told him this. After a bit more thought I turned to him and said, “I need you to understand I’m sick.”

Wesley told me he understood that. I thought, he KNOWS I’m sick, but does he UNDERSTAND what exactly that means. Does he understand that I’ll cancel plans because I can’t get out of bed, or I may push myself to do something really important to us but I’ll feel like hell afterwards? Does he understand that I’m constantly at the doctor’s office? Does he understand that I take a lot of pills and when I say I’m in pain ibuprofen won’t help? Does he understand he’ll spend a night in the ER with me every once in a while? Does he understand how scary it is to see your partner have a seizure? Does he understand how heartbreaking it is to see someone you love in so much pain they can do nothing but lay there and cry? Does he truly understand what it is to love a sick person?

I expressed this all to him, between tears, afraid he would stop wanting to see me. He took my hand and said “I don’t truly understand but I’ll try the best I can.” I had a seizure that night and he handled it remarkably well. I was impressed and very flattered that he was making the effort to do this for me, truly trying to love me, health issues and all.

After an amazing weekend and a remarkable Valentine’s Day with a person I’m sure I can love and who will come to love me back, I did some reflecting once I was alone. I then pulled up the spoon theory (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) on my phone and sent him the link with the message, “I want you to read this. It perfectly explains what my life is like.”

After reading the article he replied to me, “Wow, that’s definitely an eye opener.” I smiled when I read that and told him, “Yeah. I know. It was important to me that you know that. I can tell you I’m low on spoons now and you’ll understand.” He said he would need to read it a few more times to fully understand it. Speaking with him a few nights later he told me he’d read it again and is understanding it more.

To hear that he is trying to take the time to truly understand what it’s like to be me is something I’ve wanted for years. I just hope that he doesn’t run screaming in the other direction like so many people do when they actually experience life with a sick partner. Many people think they are prepared for that kind of stress but very few actually handle it the way they think they will.

By virtue, we are high maintenance even though many people would look at us and call us the opposite. We often don’t have the energy to pull ourselves together the way people associate with high maintenance people. The high maintenance isn’t vanity, it’s necessity. It isn’t getting up early to pick out the most fashionable outfit, it’s finding an outfit that we can a) put on without exacerbating our pain and b) that is comfortable enough for all day wear. It isn’t getting up early to do our hair it’s getting up early to take the time to wash and comb it, forget about drying it. It’s not about picking out the most stylish shoes, it’s picking out shoes we can wear with comfort. It’s not deciding which bag to use, it’s what braces to wear and what meds we need. It’s not being able to skip breakfast because we’re running late. It becomes a choice between being late and taking our meds. We’re high maintenance because that’s what we need to do to survive.

To all the healthy people out there with sick partners: We appreciate everything you do for us, even if we don’t show it. It takes a strong person to stick by us and it’s not for the faint of heart. We truly are eternally greatful.

Love & Spoons,

J.

 

 

Chronic Illness: A Quest For a Diagnosis

So, my fellow spoonies (hey there!) all know what I mean by the title.

You see doctor’s, nurses, physical therapists, paramedics, etc. for years! You see several types of specialists, often more than one of the same type. Over the past 10 or so years I’ve seen cardiologists, neurologists, psychologists, psychiatrists, primary care physicians, sports medicine doctors, ER doctors, orthopedists, physical therapist, and I’m sure others. I’ve heard so many different labels/diagnoses, and even suggestions I’m faking, all of my issues and illness. I’m sick of it! No one has taken me seriously so far.

A bit of background…

The issues began being noticed when I was a toddler. I was “W sitting”.

                                                                        Source: http://nutritiousmovement.com/w-sitting/

My mom’s friend who was a physical therapist noticed this and tried to correct me. As I got older, the same person noticed that I over pronate, or stand on the insides of my feet.

Pronation.jpg (800×442)Source:http://www.trifuel.com/files/Pronation.jpg

She mentioned that this was probably a bone deformity that should have been corrected with braces as a young child but it was too late now.

As an adult, I learned that I not only over pronate, I also have flat feet but only when I stand. (Big shout out to my current physical therapist for being the best I’ve ever seen!) I was sent to her after a sprained ankle (probably at least the 10th time I’ve hurt THAT JOINT) that hadn’t healed in months! I’m going on 6 months with the same ankle.

She told me to go buy some shoes that would help with this issue. I ended up with Brooks Addiction 12. I can’t rave about these enough but that’s for another post.

I also have been dislocating and subluxing joints my entire life! My first diagnosed one was when I was 16. I can not remember a time when something in my body didn’t hurt though. I had been told it was “growing pains”, arthritis, I was just clumsy/had bad luck/needed to be more careful, etc.

A few weeks ago I finally saw a new primary care doc. I explained all my symptoms (chronic joint pain and dislocations, hypermobility (being “loose” or “double” jointed), easy bruising, lightheadedness upon standing, etc.) along with the family history of heart problems, and told her my rockstar physical therapist had suggested Ehlers-Danlos Syndrome and that I had done A LOT of research on it and that it seemed to fit.

A week later, I log onto my online chart and see the words,

“Connective Tissue Disorder” 

I was so happy to hear that someone believed me and that all of my symptoms weren’t in my head.

She referred me to a rheumatologist to have more testing done as far as seeing which connective tissue disorder it is. That appointment is a few months away but I’m slowly getting worse and so, so angry that no one believed me for this long and so happy to finally have someone have believed what I’m dealing with.

 

If you’ve read this far I want to say welcome and thank you for reading!!

I also want to apologize for any incoherent thoughts or poor spelling. Brain fog is kicking my a** today.

As always Love & Spoons,

J.