HELPING MAKE YOUR CHRONIC PAIN JOURNEY EASIER

OUR PAIN IS INVISIBLE, BUT NOT INVALID

Tackling the shame we don’t deserve

I’m an avid planner and love all things planners, highlighters, post-its, stickers, colorful organizers, diaries, notebooks and calendars. I use planners for both personal and business-related notes, my medical appointments, how I am feeling, creating vacation itineraries and even planning to achieve certain benchmarks. So, I was really excited to discover the Go Wild Planner Conference a few years ago.The Go Wild conference is the largest of its kind in the US. It started about seven years ago, and is held in a different location every year – so far, they have hosted conferences in LA, Washington DC, Austin, New Orleans, Las Vegas, Nashville, and this year in Dallas.

The majority of the attendees are women and the conference is known for being very inclusive; I believe one of the founders is a person of diverse ability. Over the course of two days, various speakers, including founders of paper planning products and journals, deliver talks; one of the speakers this year was Martha Stewart.

When I was invited to host a breakout session on planning with chronic pain at this year’s conference, I jumped at the opportunity. I was excited to have the chance to share some of my knowledge and experience with attendees and also to connect with what I felt to be a vibrant and like-minded community and spend time amongst creative people who share my passion for using planners in artistic, therapeutic and innovative ways, whether they live with chronic pain or not.

In addition to the talks and breakout sessions, there are opportunities to get to know fellow attendees during meal times and at parties that are hosted during the conference.

Attendees are encouraged to bring ‘swag’ that they can share at the customary exchange of ‘goodies’ with others at your table. The Go Wild conference mascot is a llama, which is why I brought along llama backpacks for everyone, as well as llama pens and post-it notes and some Moving Through Chronic Pain branded items too.

My first ADA pass

I traveled alone to the Go Wild event; I needed to plan my energy expenditure extra carefully so that I would be able to manage the long journey to get there (I was flying in from Oregon), get myself set up and deliver my talk. I decided to sign up for an ADA pass so that I wouldn’t need to stand in long lines, and be able to get to where I needed to be in the most energy-saving manner – and basically look after myself. I have issues with my sight and hearing, and also twisting around so I like to be in the front of a room; if I am sitting at a conference table, I need to be sitting straight on so that I don't have to twist or move; I also wanted to be close to the door in case I needed to get up if I was uncomfortable. And the fact that I was hosting a breakout session as a person living with chronic pain, getting an ADA pass made sense. I am extremely mindful of when I think I need this kind of pass. I do not want to take away from others who may be in greater need, for example, I don't have a handicap pass on my car because I have the ability to walk. While signing up for a pass at Go Wild made sense, I will be honest – using a pass does bring up a lot of difficult emotions for me. I don't like to consider myself ‘disabled’. This is a complex topic that I will look at in greater detail in a future post.

The Americans with Disabilities Act (ADA) defines disability as “any physical or mental condition that substantially limits a major life activity” (ADA, 1990). Although people with chronic illness – that is constant or occurring repeatedly over a long period of time – are included in this definition, popular imagination tends to think of disability as mobility, sensory, and learning impairments. Not only is chronic illness the leading cause of disability in the US but also people are increasingly being hit with chronic illness earlier in life than in the past (Weil et al., 2019).

Yet, there is little understanding in workplaces, educational institutions, and as I recently experienced, public arenas, about the true nature of chronic illness and the barriers that those of us who live with chronic pain come up against.

Don’t get me wrong here, I had an overall very positive experience at the Go Wild event; I connected with some incredible people, I felt inspired by the keynote speakers and my breakout session was a great success. However, it came to my attention several times during the event that some people with ADA passes were being shamed.

Before I go any further, let me quickly share some numbers here – one in five people in America live with chronic pain; that’s 20% of our population. This means that of the 1800 people in attendance at Go Wild, statistically, 360 of them may be living with chronic pain. Yet, nowhere near 360 ADA passes were given out. And remember, 360 only represents those living with chronic pain.

The subject of my breakout session focused on the role of planning when you live with chronic pain. We covered a lot of ground and since we were just a small group of ten women, those attending were able to open up, unburden and shed some tears – I felt honored and touched that they felt comfortable enough to share some of their struggles. We talked about the different ways that they manage their pain and went over some of the planning ‘tips and tricks’ I had prepared for the session. What came up a lot were the words ‘guilt’ and ‘shame’ – how guilt holds people back – guilt around not sticking to plans, or not being able to keep regular records on a daily basis. I heard how some people had been asked why they were using an ADA pass (the underlying message being, “Why would you need that? You only have chronic pain.”)

On the second day, a woman asked if she could sit at our table (of ADA pass holders), as she too had been shamed for having a pass and had been left feeling deeply upset that this had happened to her in what should have been a supportive and inclusive environment.

The pivotal moment of the conference, for me, came during a presentation where the speaker invited attendees to share secrets. One woman stood up and started crying, saying how she had been to a breakout session the day before and for the first time in her life, spoke openly about her pain. She was referring to my breakout session! I was blown away that I had been instrumental in her being able to open up. The long journey to get there, the time and the effort I had invested in preparing for the conference were, in that moment, fully validated.

The daily struggles of living with invisible illness

Since returning from Go Wild, I have continued to give this issue a lot of thought. In my role as a peer support specialist for chronic pain, advocacy is a part of my job and I believe very strongly that we need to be honest about who we are rather than trying to hide our weaknesses; what we or another person perceives as vulnerability actually helps us to live more wholeheartedly, connect more with others, educate them, and overcome the destructive burden of shame.

The issue needs fixing. Chronic illness is commonly seen as ‘sickness’ rather than ‘disability’. As most people have been sick at some point or another, experiencing significantly milder symptoms to the chronically ill (i.e. tiredness, pain, dizziness), the experiences of those with chronic illness can be trivialized. All too often, people with chronic illnesses like Multiple Sclerosis, arthritis or endometriosis are seen as exaggerating their symptoms, and perceived as lazy, ineffective, and an unnecessary burden. And certainly not needing any ‘special concessions’.

If you look at me, my illness is not visible. I can walk and talk; meet me for the first time and unless I say so, you don't know that I have Hashimoto's, that I have glaucoma, that I live with chronic pain, that I have ADHD, that I have scoliosis. You don’t know what I live with because you can’t see any physical signs; but this doesn't mean it's not real.

Most people don’t know the difference between the overwhelming weakness and inability to function caused by medically-defined fatigue and normal, even extreme, tiredness. In truth, the experience of those of us living with chronic pain cannot be fully understood or imagined by healthy people.

Many chronic illnesses, like my own, are invisible, and this can lead to misunderstandings. We are often accused of faking our impairments and continually face trying to prove that these impairments are real.

Chronic pain symptoms fluctuate in severity on a day-to-day basis. There are days when we can function normally, days when we cannot, and many days with limited functionality; and bad days can’t be predicted. That’s why the ADA passes are so helpful to us. They can make the difference between being able to attend all the sessions we want to during an event, or needing to leave early or spend one or several of the days in bed.

Having an invisible illness is hard. It can also be exhausting to educate others and advocate for yourself so people will believe you. However, it is necessary to do so in order to have your needs met and take care of yourself. People with visible disabilities also need to advocate for themselves due to ableism in society. The difference for those with invisible illness is you also need to ‘prove’ you are sick. And once you do, people may frequently forget because your illness is out of sight and out of mind to them. Although, living with the illness you do not get the luxury of your illness being out of sight and out of mind as you live with it daily.

While having an invisible illness is burdensome, the ability to be able to ‘hide’ your illness can be helpful when facing prejudice and discrimination. The problem is that people with invisible illnesses are often taught to lean into this and hide their disability, which tends to cause more issues than benefits.

It is important to know that having an invisible illness is valid and it is not our job to hide this from others in order to make them comfortable. It is not something to be shamed, or to be ashamed of.

When you live with an invisible illness, you need to remind yourself that your disability is real and valid. Coping with the struggles that come with invisible illness mainly includes believing in yourself and your own experiences. If you are able to validate your experiences, you can better advocate for yourself, notice ableism around you, and take care of yourself both mentally and physically. Sign up for that ADA pass. You are completely entitled to it. Don’t hesitate, don’t question it. Use it proudly.

The more you are able to communicate about your experiences, even if others cannot see it, the more likely you are to gain understanding from those around you and come one step closer to raising greater awareness among those ‘shamers’.

#chronicpain #understandingpain #chronicpaincauses #painawareness #peersforpain #invisibleillness

Michelle Marikos’ fall from a balcony in her early twenties, and her subsequent decades long debilitating chronic pain, inspired her to launch Moving Through Chronic Pain and her PEER™ Method programs to facilitate deeper connections between those living with chronic pain and their community of providers, employers, and family members.

Michelle Marikos, Founder & CEO
Moving Through Chronic Pain