Adjusting to Lupus: I’ve Been Diagnosed With Lupus — Now What?
Receiving your lupus diagnosis may have generated feelings of fear, confusion, and an overall sense of loss of control.
But know that this diagnosis doesn’t mean the end of all things as you know them. Just think of lupus as that much-needed, but forced, nudge towards living healthier, because your personal health must now be a top priority!
The following are logical ways to approach keeping ahead of flare-up causing agents and suggestions you can apply towards your daily life.
Increased Sensitivity to Sunlight
Reducing your exposure to sunlight (which can cause flare-ups) does not mean you can no longer enjoy the outdoors. My family and I continue to take beach vacations and enjoy outdoor activities on a very regular basis, but I have to anticipate many things prior to enjoying the outdoors, including:
- Do I need to wear a hat?
- Will shade be available?
- How long can I expect to be outside?
- Have I put my daily sunscreen on yet?
This might seem like a lot to consider just to go outside, but these things could allow you the opportunity to enjoy the outdoors.
I highly recommend the sunblock brand Think Sport. It comes in SPF 50 and goes on easily without leaving a greasy mess behind — important seeing as someone with lupus should be wearing sunblock on a daily basis.
Predisposition to Excessive Inflammation
Stress and certain activities are understood to cause the tissue inflammation that leads to painful flare-ups. Another thing that can have an impact on inflammation is the gluten in foods.
I know, the annoying gluten-free bandwagon is not one you wanted to jump on, but a gluten-free diet could mean less exposure to inflammation-causing agents, and allow you to incorporate other food options you may have otherwise ignored.
The book Wheat Belly by William Davis can help guide you on the new path of living gluten-free. It is full of information on the damage that gluten causes the gut, the impact it has on our health, and recommendations on recipes and foods that you can enjoy despite this new dietary shift.
If going gluten-free is too much of an undertaking for you, aim for clean eating. Clean eating means consuming little to no processed and chemically-altered foods, so shop and eat organic and non-GMO as much as you can.
Physical Limitations Due to Joint Stiffness/Pain
There will be days where you are in so much pain that even the simple task of pulling on your own socks seems impossible.
I, too, am familiar with pain and the frustration it leads to. I endured an intense six-week flare-up three days after having my last daughter. Because the joints of my hands, wrists, and legs were affected during this flare, I could barely dress myself, let alone hold my newborn baby.
One of the things that did help me during this time was the simple activity of walking. I would walk the neighborhood at least once a day with my baby in her stroller (as a less obvious walking stabilizer), which helped ease the stiffness in my body.
Was it still painful? Absolutely — but it helped me immensely! Remaining active in any possible way not only helps to keep flare-ups at bay, but also reduces the amount of restrictive stiffness they produce.
Practicing activities such as yoga, pilates, walking, biking or seeking out holistic treatments such as acupuncture, massage therapy, or chiropractic care can all contribute to healthier joints overall.
Higher Risk of Depression
When your mind tells you that you are capable of doing one thing but your body simply does not allow it, helplessness, anger and depression can set in. Having medical and personal support can help alleviate those feelings.
Seeing your rheumatologist on a regular basis is key to keeping as ahead of your lupus as possible. Processing through medications, tests, and recommendations from your doctor may become exhausting, but once a proper regimen is found for you, a sense of control is regained!
Remaining as open and honest to those in your life about what and how you feel provides them with information as to how they can help you. This will also give them appropriate perspective on your current abilities, rather than your pre-lupus abilities.
This also serves as a reminder to you of what you can and cannot do. This is something I struggle with on a regular basis, but I thankfully have people in my life who set me straight when denial of my lupus takes over my acceptance of it.
Whether or not you have an adequate support system in your life, seeing a therapist could benefit you immensely. There is no shame in reaching out for help in any way when it is needed, especially for a person struggling with a life-changing autoimmune disease.
Where to From Here?
Lupus is not a dead-end road in your life.
Yes, it is an incredibly serious autoimmune disease that requires monitoring, lifestyle changes, and, at times, medical interventions, but approaching all of the above with as much positivity as possible can truly minimize the negative impact that lupus has on your life.
Adjusting to lupus and accepting these new limitations, as temporary or permanent as they might be, might be hard — but remember that they do not define you presently and they do not have to dictate your future.