Part Four - Subtle ways to show loved ones how you are feeling when you have a long-term health condition (LTHC)
(Image from Stickman Communications)
The constant demands of medical professionals — family — friends and colleagues for explanations from those living with long-term health conditions can be overwhelming. The constant need to explain how they feel can make patients wonder if this is all people want to talk to them about.
Help is at hand to offer guidance to those supporting and trying to understand people they know who may be living with one or multiple health conditions. There is also support for those living with these conditions to allow others to acknowledge that something is wrong or what level of pain — illness or mental stress they are feeling without the need for constant explanations.
The Sunflower is a global inclusive network that supports those with invisible disabilities. The flower represents a person's condition(s) discreetly. Organisations sign up to the scheme and employees recognise the emblem and are immediately alerted to the fact that additional help may be required. You can purchase a range of Sunflower products directly from the shop which includes badges, stickers, lanyards and face coverings.
When brain fog hits the last thing people feel able to do is put together complex explanations. Often people don’t want to share for fear of judgement, resentment or rejection. There are some great blogs and theories to help people understand these situations. They include ColourBlind Zebra which is run by Abby who is Autistic and also has Hypermobility Syndrome and But You Don’t Look Sick by Christine Miserandino who has Lupus Disease. Both are comprehensive blog sites that offer ready-made examples of how to explain chronic illness and its impact on daily life to those around us in our support network.
Stickman Communications created by Hannah Ensor is a method of communicating and aiding understanding through the use of stickman drawings and simple descriptions. Her range of products includes laminated cards, Status Square Clips and new to the range The Symptom Wristband which is double-sided — has different wording on each side which tells people discreetly at any moment that either —now is not too bad or — now is tough.
Hannah Ensor said (on one of her cards) “When my brain fog is bad, I love being able to give friends, family, and colleagues the heads up without having to talk about it. Wearing this on a lanyard, or putting it next to me does the trick nicely”.
Simplicity is the key to the success of these theories and products. Their effectiveness is made better by the number of people utilising and acknowledging the work created by those who have long suffered from chronic illness and therefore have the knowledge and understanding to lead the way for others who are coming to terms with a recent diagnosis or potential relapse in their conditions.
Life can be unpredictable — uncertainty — stress makes everything worse — stress makes health conditions worse. So whatever we can do to ease the pressure is worth putting effort into. Finding the balance that’s right for each individual is crucial.
12 Things Not to Say to People with a Chronic or invisible illness: https://colourblindzebra.com/blogs/colourblind-zebra-chronic-illness-blogger/12-things-not-to-say-to-people-with-a-chronic-or-invisible-illness
The Spoon Theory by Christine Miserandino https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Stickman Communications — Symptom Wristband: https://stickmancommunications.co.uk/product/now-is-symptom-wristband/
Stickman Communications — Status Squares: https://stickmancommunications.co.uk/product/status-squares-clip-and-all-tokens-pack-2/
Sunflower Emblem Products: https://hiddendisabilitiesstore.com/uk/