Weight and Diet
People with lupus already get a great deal of advice from their doctors, they don’t need more. In the end, people with lupus are on the front lines of their disease. They are the ones most aware of their situation and what makes them feel good, what makes them feel bad, what causes flares, and what they are actually able to do to help themselves. Due to pain, it can be difficult to exercise and due to flare triggers and food availability, it can be difficult to keep to a proper diet. Most people with lupus are in the process of figuring out how to manage their disease. Nagging or unasked-for recommendations are stressful, annoying, and it is also very likely that they have tried that method already.
It’s much better to be supportive – help with cooking, cleaning and exercise, be encouraging, and be a good listening ear. These can be much more effective than advice.
What is Fatigue
Fatigue is a feeling of tiredness and a lack of energy, and it has many different causes. In lupus, there are three main reasons for fatigue:
The body is attacking its own cells, so it is expending energy on a misguided fight against itself, as well as on healing the damage. That takes away energy that a person might otherwise use for other activities.
Worrying about lupus, and the stress from having to deal with the pain and other symptoms of lupus (including not being believed by doctors or family!) uses up energy and can be exhausting on its own. Managing lupus through medications and other strategies and having a supportive and understanding family can stop this particular drain on their energy.
Everything is literally more difficult to do. Joints get stiff and are harder to move, blood vessels get inflamed and the heart has to work harder to get the same result, muscles and other organs are inflamed and not able to operate at full efficiency. Of particular note, the brain and nervous system are affected by lupus and sometimes nerve signals have to travel through gunked up areas of inflammation or take alternate, longer routes entirely. All of the small additional difficulties and efforts required add up.
The exhaustion that lupus brings is much like how someone feels during a fever – lethargic and miserable. It isn’t laziness if someone with lupus cannot get out of bed that day – there are just a lot more invisible tasks that their body had to add to the checklist before getting up. Though they may look ‘healthy,’ many things are happening inside them and sometimes a person with lupus has to let certain tasks, even important ones, fall to the wayside in favor of essential tasks like eating, self-care, or taking care of a dependent. Even with prioritizing, people with lupus sometimes have to overextend their reserves and replenish those reserves from tomorrow’s energy.
Spoon theory was designed as a way to help people understand, visually, what is happening with the energy levels of a person with lupus. You can read more about it here.
Medication and proper treatment can help with fatigue, and supportive family members can take some of the load off. Fatigue can also fluctuate with the seasons.
One thought on “Talking to Your Family About Lupus: Tips & Tricks”
Thank you for this wonderfully written article on EXACTLY how it feels to have and live with Lupus and for suggestions on how family and friends can help out. Very well written and it was a comfort for me to read and not feel so alone struggling with “The Wolf”.