Isolated.

I want to talk about isolation. I would like to share my own experience with isolation and how it became a downwards spiral that I'm not even sure I realized the extent of until I no longer felt like myself.

My diagnosis was a long time coming. My GP had expressed that she thought that my diagnosis would be Fibromyalgia but that it required tests to confirm it wasn't something more serious and a rheumatologist to make the official diagnosis. From start to finish the process took almost ten years. I was eager to find out what was wrong with me and I secretly thought that when I learned what that was, I would be able to "fix" it. My diagnosis came in October of 2019 and you can read more about this here. I remember very shortly after the news I was visiting my family for Thanksgiving. One of the family members who had significant health issues herself said, "you must be so relieved that you finally got a diagnosis!" I burst into tears. I didn't feel like that at all! I felt misunderstood. It wasn't that she was trying to be malicious, I don't think she has a malicious bone in her body! Her own mom was diagnosed with Fibromyalgia so I suppose she was sharing her mom's feelings of relief when she got her own diagnosis. I remember her saying something to the effect that I now had power since I had a diagnosis. Except I felt completely powerless - there was not a confirmed cause nor a cure for Fibromyalgia. No magical medicine or procedure that would make me better. I felt like I should just be thankful that it was not a degenerative disease and in and of itself wasn't going to kill me. At the time I wasn't aware of the empowerment that I would feel when I started to learn about chronic pain at Constance Lethbridge, instead I just felt helpless.

I felt misunderstood. My loved ones; my mom, my inlaws, my husband and my own children were supportive but they weren't going through it so they didn't fully understand. That divide plagued my mind and I felt more and more lonely.

As much as it wasn't the vast majority of people, there were people that were skeptical of of my pain. Going back to the idea that chronic pain conditions are often invisible, naturally people have a hard time believing what they cannot see which can lead to doubt. "My friend got rid of her pain by...". "Why don't you just push through it?" "You need to be positive!" To this day the most common one that I get and it's rarely meant to be spiteful is, "you don't look sick." That one doesn't bring about the same sense of frustration as the other ones do but it's still such a common misconception that all sick people "look sick". It makes me think of Lady Gaga. In 2017 she came out in a statement on Twitter and announced that her severe physical pain and shortly after followed up by saying that it was Fibromyalgia. I don't look at Lady Gaga and ever think of someone who looks sick. She looks vibrant, full of energy and capable of so much which is why on a deeper level I understand when people look at me and say, "you don't look sick."

When you're sick you often have to turn down invitations to even the most inviting of engagements. You may feel uncomfortable saying, "I don't have enough spoons for this now" or "I'm in too much pain." Over time people assume that you don't want to participate in activities or even take it personally. The invites become less frequent or stop altogether. This may not be the case for everyone but I found it true for myself and other spoonies who have shared about their similar situations.

For these reasons above and many more I felt very alone; very isolated in my pain. Those FEELINGS of isolation actually cumulatively added up to actual isolation. Isolation from social acitivities with friends and family. Isolation in the form of not wanting to meet new people (or explain my condition to yet another person) or even engage in activities that used to bring me joy. Sometimes I felt that if I couldn't do the same things that I used to do or couldn't do them in the same way, what was the point? It felt like a total drag asking people to accomodate me and my needs. When they did accomodate I was thankful but also felt guilty and like people were "missing out" on my account.

The problem is when you isolate yourself you get caught in this cycle of avoidance. I can speak from experience. You may start from a seemingly innocent place where you feel as if you're inconveniencing people if you need to leave early for an event or even require some sort of extra aid (as insignificant as needing a different kind of chair for an event in order to be able to sit with less pain). You pull back. Maybe the first time you attend the event you go beyond your personal pain boundaries. The next time you might tell that person you're sick so you can't come and it's met with sympathy. The next time something came up that you couldn't get out of. So on and so forth. Before you know it you're avoiding all of these activities and events. The cycle deepens and it's lonely in a world of avoidance and isolation.

Had you asked me if I was in fact avoiding situations I would have clearly said no. I was doing what was best for my body. I was so far down that rabbit hole that it took being together in the chronic pain self-management program to pull me (slowly) back out. Being around other people who understood my condition; whether they had Fibromyalgia or another chronic pain condition, made me realize that some people understood what I was going through. Support. Sure I had my husband and kids but it wasn't the same thing. Interacting with people who understood my condition made me reflect on what else I was missing out on by isolating myself. I started saying yes to dinner invitations and day trips with friends.

Now I want to be clear about the difference between avoidance and setting boundaries. Avoiding situations because you feel uncomfortable or anxious about what people might think of you or your condition is not helpful. Setting boundaries when it comes to your personal energy levels and abilities is absolutely helpful and healthy.

If you find yourself isolating yourself from chronic pain know that you're not alone. You're not broken or messed up but maybe you have reached a point where you need some help. Reaching out to a registered therapist to talk about your feelings of isolation can be a very important first step to breaking the cycle. Also I remember feeling like it was all or nothing. I had to attend an event in its entirety or it didn't count. You can alter or change the specifics of an event to what suits you. If you can't, you do have the power to say no and that's okay too. You can choose to do acitivities when you're feeling good and cancel activities if you have no more spoons left to give. You can also plan activities that don't break the bank, especially if your chronic pain condition requires expensive care and you cannot afford to spend a lot on leisure. There are no specific rules except that isolating yourself when you're in pain is not the answer. Isolation plays a role in your mental health and depression/anxiety can intensify when you feel alone. Please reach out and ask for help if you need it, below I will include some links for mental health resources in and around the Montreal (Quebec) area.

For help or info with mental health in Quebec call 811. Press "2" for social services. You will be able to speak to a social worker. I have used this for myself and it was very comforting in my time of need.

Call 9-1-1 emergency services for immediate help in a mental health crisis, including but not limited to suicidal thoughts.

The suicidal prevention and info hotline's number is 1-866-APPELLE(277-3553) for suicidal thoughts for you or a loved one. Including but not limited to people in chronic pain.

There are walk-in psycho/social services at CLSCs around Quebec. Call to find out specific times in your region. You will be able to walk in and ask to speak to a social worker about your needs (therapy, etc...)

Suicidal prevention and info by text or chat can be found at www.suicide.ca 24 hours a day and 7 days a week. 365 days a year. * Services available in both French and English. *

Call your family doctor for a referral to a specialist and of course there are many private resources available as well (if money is not an obstacle).