Weight is often an emotive subject, with many EDSers worried that their weight is too high or two low.
Like any other part of the population, there are EDSers who weigh more than the average. A proportion of these are naturally this weight. They may have weighed more than average since birth, and have similar weight family members. This is to be expected, given the genetic component of human weight.
Some weigh more than their natural weight due to what’s known as weight cycling or yo-yo dieting. Again, this is in line with the general population. Weight cycling occurs as the body’s natural response to calorie deprivation followed by renewed access to food. This most commonly takes the form of weight re-gain after dieting. In fact, most dieters regain the weight they lost within two years of starting their diet, and a large proportion re-gain to a higher weight than they started. Again, EDSers are no different to the rest of the population in this regard.
EDSers may end up weighing more than their natural weight due to other factors more in common to those with other chronic conditions. The first of these is where weight gain is a side effect of medication. Lack of adequate sleep, quite common in EDS, can also lead to weight gain. As can undiagnosed and untreated sleep apnoea. Chronic stress is also a huge factor in weight gain. Chronic stress can have physical causes such as chronic pain and injuries. It can also have mental causes, such as a lack of support or depression.
All of these factors can lead those with EDS, or indeed anyone, to weigh more than the national average. This is mistakenly thought to be a bad thing. In fact, many doctors show weight bias in how they treat patients. Which perpetuates the chronic stress these patients experience. They may prescribe weight loss as a solution to many issues the patient is having. But seeing as long term weight loss is impossible for more than a tiny minority of people, this advice is very outdated.
It is better in these cases to ensure that rather than focus on your weight, you focus more on getting enough sleep, and taking time to try and reduce pain and stress as much as you can. Also, while you may wish to exercise to improve your muscle mass and hopefully lessen issues such as dislocations, this has nothing to do with your weight.
On the other end of the scale, many with EDS struggle to gain enough weight or to slow down harmful weight loss. Many of us suffer from gastrointestinal issues such as hiatal hernias, GERD, constipation and, especially hard when trying to gain weight, gastroparesis. Some suffer from complete intestinal failure. Dystautonomia also causes symptoms, such as dizziness and nausea, which make it hard to eat.
A lot of EDSers come up with workarounds, such as small but frequent meals, liquid meals, nutritional supplement shakes and various medications. Sometimes, however, this is not enough and we have to rely on measures such as gastro-nasal tubes, g-tubes and j-tubes. I won’t go into detail on these as I don’t know enough about them, but I do know a lot of people who has to have them as a direct result of EDS and/or Dysautonomia eg POTS.
Another point to make is that people with EDS probably have a higher calorific need than we think. We are constantly injuring ourselves, whether through bumps and falls or dislocations. And the body needs calories to fascilitate healing.
For those who have both EDS and ASD (or similar, such as Sensory Processing Disorder), there can be the added issue of picky eating due to sensory issues. It is important to ensure that this does not lead to weight loss (or failure to gain weight, in children). It’s just one more layer of complication, as if life weren’t complicated enough.
A fact that’s not well known enough is that weighing less than average is much more harmful than weighing more. Not only does it lead to a sorter life, but outcomes for diseases such as diabetes are worse. I’d recommend this article for more information on this.
I think the main point I want to make, regardless of whether you have EDS or not, is that it is very important to make sure you eat enough. And that you get enough sleep. And try to reduce pain and stress as much as you can. Take care of these, and weight will be much less of an issue.
[image of a yellow background, with the words ‘ W is for Weight’ in black. ]