Is Patient Advocacy Worth The Obstacles?

Three years ago I started my blog, and this has put me on a course I didn’t expect. It brought me back into the MS Society after a ten-year absence. By becoming involved, I saw how much they are doing to support people like me. They did, and still do, need more people with MS to share their experiences and to be the voice of the community. 

My blog gave me the courage to write for the MS Society blog and to help organisations like IMI-PARADIGM to understand the needs of the patient. It also gave me the opportunity to work in research on the COB-MS trial. The COB-MS trial is checking the feasibility of a new therapy for people with MS who have cognitive problems. 

Being a researcher has shown what we can do to improve the quality of research. I have created Patient Information Sheets, helped design the materials used in the study, and act as a bridge between research and patient. As part of this, I will present to the Population Health and Health Services Research Autumn Seminar Series on November 24th with my colleague Dr Sinéad Hynes. We will share our experiences of Patient Involvement. 

Another result of my blog has been to train as a Patient Expert. This is being taught by EUPATI and Joan Jordan (a friend and inspiration from the MS & Me blog) is an EUPATI Fellow. Her description of the training made me want to learn some of what Joan has. I am still in the middle of this and we recently completed the first online classes, which built on the course content we have been reading since last November. I also followed Joan into being a part of IPPOSI, a patient organisation in Ireland which is promoting the inclusion of the patient in research, as a researcher.

I also recently completed a four-part podcast with Dr. Jonathan Egan on how to manage anxiety, stress and depression during the pandemic for people with MS. The feedback from the people who have listened to the content has been fantastic. It is pushing me to do more, as I see the positive impact. You can listen to it here.

The downside of Patient Advocacy 

All this comes with a price. I am not writing this for sympathy, but to give people who don’t have a disability or chronic illness, an idea of what we must do to take part in the wider world. 

They conducted the EUPATI training over four days, starting at 8 am and finishing around 2:30. With about 1.5 hours of breaks. Once it finished each day I went immediately to bed. The reason – my headaches (they are migraine-like) soared from a level 5 to over 8, plus the extra pain reduced my mobility. This happened each day with the impact more severe as the course progressed. When it was complete, it took me another 5 days to return to my normal. This is a massive impact and is not something I can do often, perhaps twice a year.

The training webinars took about an hour to record, but the concentration required had a similar impact as the EUPATI training. Bed for the rest of the day, and most of the next day, and finally returning to normal on day 3. The cumulative effect of doing this for four weeks also took its toll, and again a long recovery period. 

Because of my pain and MS, I need to pace myself. A struggle at the best of times, and there are so many things I would love to do, but I cannot do them. I have to prioritise physical therapy, rest, and have the energy to do these projects.

There are a few other things I am doing. 

Trying to figure out the best mobility scooter to help me move around the town, and if we travel somewhere, like the local city for shopping. It is a challenge to find something which is big enough for me so I don’t get leg cramps, can drive over a curb and fit into the back of an SUV with some crane. With the world slowed down because of COVID-19, it is very hard to speak with the companies who do the adaptations on cars and trial suitable scooters. Plus, I am doing this through the HSE (the Irish Health System), and this limits the options. 

I also need to get a stairlift which involves letters from different people, such as an Occupational Therapist Report, proofs of income, as I am looking for funding for it from the local county council. This all takes time and completing forms. These documents are becoming more difficult to complete because of my headaches.

The social welfare services are sending me letters frequently as they seem to want to keep re-assessing my Disability Allowance. Letter about if I went on holidays, the income of my partner, and whether I can still get help with extra household costs because of my disability. I believe, because I do some paid work (in the university) they suspect my claim. It feels like I am being punished for working. Work I need to do to maintain my mental health. I don’t get any physical benefit from work; it takes a huge toll on my body, but it makes me feel of value. Last week I received three letters from Social Welfare about three different topics. They involved two phone calls and three letters in reply. To do this, it cost me two full days. The three hours work involved plus having to go to bed for the balance of the day because of pain. 

Cross roads

I feel like I am at an inflection point in my life, with a choice to make. How to weigh up the different aspects. Will the positives outweigh the negative? These are my thoughts so far.

The positives

1. My patient advocacy work gives me immense satisfaction. 
2. I enjoy giving my contribution to the research we are doing in NUIG. 
3. The positive feedback on the webinar was brilliant, and I would hope any future ones will also help.
4. My blog gives me an outlet for these types of thoughts.
5. The podcast and YouTube content are helping people.

The negatives

1. The drain on my energy, energy I could use to keep me healthier, longer.
2. Risk losing social welfare support. The social welfare system for disabled people is the same as it is for unemployed. The same rules apply, plus the rules for being disabled. It allows me to earn extra income, which unemployed people cannot do. The payment rates are the same. This income helps to soften the financial shocks which come with disability and illness. Extra household, medical and dietary costs are a reality. If I lost this payment, it would be a disaster, and paid work threatens this stability.
3. If I don’t do advocacy work, I will not have the income to pay for my medication which helps my spasticity and pain. 
4. Paid work makes it harder for me to get state support for a mobility scooter, stairlift, and help with rental costs. It appears working when you are disabled is frowned upon. Almost an objectionable activity. It is hard to be a productive part of society when society is making it more difficult to be part of it.

I really don’t know how I will make this decision. It feels like the system is wearing me down. Telling me I must stop doing paid work, or even unpaid work. The sad extra is my body is also objecting to work, and its voice is loud and strong. 

What decision to make?

Having to decide this is the reality for so many people with disabilities and illnesses. Society makes the bold statement it wants to be inclusive, to give everyone an equal opportunity to be a productive part of the world. Yet, its actions speak differently. Work supports are very hard to achieve. It doesn’t like when we work freelance, pushing us into work which doesn’t have flexibility built in, and it therefor isn’t suitable work. 

I would love to know if any of my readers have faced these decisions? What did you consider when deciding? What was your choice?