At the beginning of navigating my treatment and care around lipedema, I needed to first discover that I had lipedema. A documentary called Lipedema: The Disease They Call Fat was my first exposure to this health issue. The small outline of a body that looked like mine was just the clickbait I needed. It was January 2020 and Covid-19 was making its way across the world. I’m an action-oriented person so I dove in, watching conferences, reading different studies, and trying to find as much information as I could, this is my life and I needed to know more. I strongly recommend taking a look at the following link at Dr. Herbst’s diagnostic criteria published in 2016, Lipedema: A Relatively Common Disease with Extremely Common Misconceptions. I found this a very comprehensive article, not too high level that I’d struggle to grasp, but not so simplified that there are a ton of gaps.
MLD was the first thing, but what is MLD? Manual Lymphatic Drainage is when the skin is massaged, stretched, and torqued in a specific manner proven to encourage lymph flow which is often compromised in people with lipedema. If performed correctly with the correct pressure, direction and speed, this can greatly enhance recovery and facilitate drainage. It also has profound effects on systems in the body. All lipedema fat contains swelling, even in stage 1. This therapy helps provide some relief and combined with compression helps slow down the progression of fibrosis, and provides support to the lymphatic system and blood vessels to manage the swelling.
I googled “MLD therapy Halifax” and I found the MLD Clinic in Spryfield and made an appointment immediately. I asked if they were familiar with lipedema as I thought based on all the information I’d digested that I was suffering from this condition. The MLD therapist there has been doing this work for many years and by the time women with lipedema get to him it is a result of other health issues associated with lipedema like the development of lymphedema.
Talking to your General Practitioner
I also made an appointment with my GP. In Canada there are very few practitioners who have any knowledge of lipedema, my doctor included. This is a huge problem, especially when it is such a common disease. Unfortunately, by the time there are any red flags with chronic pain and joint deterioration, lymphedema, we are often at an advanced stage and because of the physical attributes of this disease (Fat tissue) we are dismissed and discriminated against. Eat less, move more, easy right? Why does dieting have a 90% failure rate? Is this health care? It is not OK regardless of your body’s appearance to be treated as subhuman, but the truth is fat people are often not treated appropriately.
We are afraid of losing our GPs (1 in 10 Nova Scotians do not have access to a family doctor), so they put up and shut up about mistreatment in the doctors’ offices. Because of the way “fat women” are treated by medical professionals most stop reaching out for help. They stop talking about the pain, their digestive issues, and their fatigue and never approach the college about the completely disgusting way they were treated. Having someone who treats you poorly and does not provide adequate care is better than having no one.
When I first brought lipedema to my family doctor, she was very honest. She had no experience with this condition and mistakenly called it Lymphedema (as that is the only condition many medical professionals have awareness of, but again, have no training or specialists to turn to here is NS). She asked what treatment options were recommended, we discussed the options based on academic journals and the Lipedema Foundations resources. She started by recommending conservative treatments of MLD (Manual Lymphatic Drainage), CDT (Complete Decongestive Therapy), and compression therapy.
MLD Clinics in Halifax
There are two clinics that I have found in Halifax whose main focus of treatment is on swelling disorders. The MLD Clinic and Sunnybrae Therapeutics work with lipedema and lymphedema patients. They both have world-class therapists. For both conditions, the conservative treatments/symptom management are the same. These therapists are not able to make a diagnosis, but because of their training and expertise in lymphatic disorders and therapy, they can be a lifeline and they can communicate with your doctor if your physical presentation and personal history fit the criteria for lipedema, they can send a letter to your practitioner as well. Dr. Thomas Ransom is an endocrinologist in Halifax and has experience with lipedema and can diagnose and recommend treatment as well. I called his office to make sure that he has experience with lipoedema and my MLD therapist said that he has gotten referrals from him for lipedema patients in the past. The wait times are long (4-6 months), but not too bad considering the plastic surgeon I was referred to by our provincial insurer is a decade (and he has no expertise in my disease or treatments for lipedema or lymphedema). Endocrinologists can give a diagnosis of lipedema and refer for conservative management as well as surgical treatment.
Fighting for my life
Currently, I am in a legal battle with my province over coverage of my lipedema treatment. Having properly adhered to all conservative management protocols, still my condition continues to deteriorate. Soon I’ll be looking at full-time disability if I do not receive surgical intervention. The province would rather see me at home fully disabled rather than a productive member of society, actively contributing to my community and as a taxpayer.
Over the years I have done many things to manage my pain and help keep my mobility, I had no idea that they were often recommended to help people with lipedema manage their pain, but I found them all as a result of my advocacy and relentless persistence to not accept a life where I couldn’t walk or move to be my fate. My GP said that if these treatments affect the tissue, then we would look at a diagnosis. From there my doctor did research and my MLD therapist (who cannot make a diagnosis, but who has training in the conservative treatment of lipedema and lymphedema), wrote my doctor a letter explaining my physical symptoms and how they fit the profile of lipedema. It has been incredibly difficult, but I have been adhering to all conservative treatment recommended since February of 2021 and have received a diagnosis from my GP, which has been confirmed by an endocrinologist, and by a lipedema surgeon in Germany.
Nothing should be this difficult
Not a single treatment for my disease is covered by MSI (Medical Services Insurance) program here in Nova Scotia, Canada. At the end of my first visit to the MLD clinic, my suspicions were confirmed, and a treatment plan was recommended. I do what is recommended, I’m a doer, I get things done, I follow instructions, and I’ve been called an ideal patient many times. This plan was going to cost about $3500!!! The supplies for bandages were over $600, the compression garments were almost $1000 each, the sessions were about $140 per 75-minute session, and I had to go every day for two weeks, then I would be measured for compression garments and when they came, I would be able to move from the bandages into the garments. That was almost another 2 weeks!
Now, I was mad! I wanted to do it. But I didn’t have that kind of money. I have been off work for almost a decade. My husbands’ private medical insurance only puts a dent in the care I need to manage my pain on the regular and now I have this huge bill just to start managing my lipedema (our private insurance plan lumps all services together and gives you a base amount shared between them all). This plan is likely better than many other Nova Scotians have access to and is fantastic if you are not sick and have almost no need for it. I’ve been struggling to make the most of it for 10 years and it was not enough before, how could I possibly do this? But now I had a diagnosis, I have a medical issue that needs attention so I can go back to work, I can play with my kids, can get my life back; I was so very wrong.
Not only was this very expensive treatment weighing on our family financially, but it demands adherence and consistency. I can do that, I can do anything, I’m smart and motivated, and I’m going to do my best! My quality of life is important, I’m not a spectator, I’m a participant and so many women with lipedema have become spectators.
Sidelined in Our Own Lives
The complete lack of awareness and resources available to them allows their disease to ravage their bodies for literal decades. The demands of adhering to compression therapy with large amounts of adipose tissue and the steady decline in dexterity (lipedema has many comorbidities, mine include psoriatic arthritis which flared just a couple of days into CDT and has been making things significantly harder ever since). As my arthritis gets worse my ability to manage conservative therapies diminish. Today I could barely squeeze out the dishcloth, putting on my compression was so painful and hard. I do not have the strength I once had, I do not have the endurance, and now with all the compression garments I have to fight to move with every movement.
For people living on the margins, who are only treading water all the time this is devastating. I was told that it was ‘not a big deal’, it was only about the cost of one ‘vacation’, just skip it and you will have it paid for. My future self would thank me, and that may be true, but I had to take a loan to do the conservative treatment. There were no vacations to forego, there was a trip to a u-pick farm to pick cherries, and day trips to the beach with cut-up watermelons and water bottles. There are car payments, gas, mortgage, bills, food, student loans, and RESPs so my kids do not suffer into their 40s with soul-crushing debt. Now I have a disease that costs a fortune to ‘manage’ and that management has very limited success and requires huge amounts of time, and money and steals from my quality of life daily.
Depending on where you go, and some clinics do not directly bill private insurers, then you need to have that money upfront and wait for reimbursement. How many people have access to that money upfront, even if they have private health care insurance? Depending on where you live it is very likely you do not have access to a trained MLD therapist or a compression fitter. Off-the-shelf compression garments are not designed for bodies like ours. In almost all cases compression needs to be custom to be effective. Not only do a very small number of women in Nova Scotia know about this medical condition but even a smaller number of healthcare professionals have any knowledge at all about it. Statistically speaking, tens of thousands of NS women are heavily impacted by lipedema, and their health issues are compounded because they go decades with no diagnosis and no support.