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I have been a Lupus Sufferer for nearly two decades.
Over 20 years, I’ve navigated the unpredictable journey of living with Lupus. It’s been a rollercoaster of ups and downs, but I’ve been fortunate to have a strong support system and dedicated medical professionals by my side. My resilience in the face of this challenging condition is a testament to the strength that can be found in the Lupus community.
In Honor of Lupus Awareness Month, here are six things that I wish people knew about Lupus.
Lupus Is a Chronic And Incurable Condition
Just because you see Lupus Sufferers active does not mean we are ‘better’ or ‘cured.’ Sufferers have some days when the pain level is tolerable and some days when it is not, so it is vital that we take full advantage of the days we can function at all.
I can’t stress enough how important it is to understand that Lupus is unpredictable. We can be okay one day but not the next or even the next hour. This unpredictability often makes planning anything almost impossible. We wake up every day not knowing how we will feel, and unfortunately, this means we may have to cancel plans at the last minute, so please find a way to forgive us if and when this happens, and know that we are as disappointed as you are.
However, please keep inviting us to things; otherwise, this can make us even more isolated. When Lupus does not flare for a long time, we call that remission; again, that does not mean we are cured, as the most minor things can cause Lupus to flare up again.
You Cannot Simply Fix Lupus With Medication
Living with Lupus is an ongoing battle. There are thankfully more treatments for Lupus now than there were 40 years ago when Lupus was considered a death sentence. However, unlike other conditions where you take medication and are better, this is not the case with Lupus.
The drugs that are often used to manage Lupus and lessen the severity of the symptoms must be continually reviewed and swapped to something else, or the dose altered as conditions change or new symptoms develop, so we are in a continued battle with Lupus. The other issue with medication is that it all comes with the possibility of side effects, which can often be as bad as the disease.
Lupus Sufferer Do Not Always Look Sick
What is going on the inside needs to be reflected on the outside. People often say how well we look and assume we are ‘better,’ but as I said previously, we are never going to ‘get better.’ It is likely that someone may look very well but is battling severe pain.
The worst thing about looking so well is that people can think that you are making up the fact that you have Lupus and not believe us; seriously, if I were going to make up a condition, I would choose one that people would understand and accept. Whatever we look like, we are not cured.
It would help if you had a good night’s sleep. Getting more sleep may help others, but we cannot sleep at night. Insomnia is quite common in lupus patients. Ironically, we are always exhausted, but Lupus steals our ability to sleep.
People living with Lupus at Times Isolate Themselves
We Lupus Suffer are often coping with a chronic painful illness, both mentally and exhausting and while this may mean we want to be left alone for a while, it is helpful to understand that this is in no way personal, and if you are worried, it would be nice send a text to let us know you are thinking of us.
Patience Is Key When Dealing With Lupus Sufferers
It’s important to be patient when communicating with someone with Lupus, as it can attack any organ, including the brain. The result can be severe, and the majority experience what we refer to as ‘lupus brain fog’, which is less severe but highly frustrating for us.
It is like going into a room without knowing why we went in there. Our thoughts can be jumbled, and we can struggle for the appropriate word, so people should be patient while we try to express themselves. I often babble to get the words out whilst they are in my head or interrupt to say something before I forget it forever. People criticise this, and someone said, ‘Don’t you speak quickly’, which I found rude and a bit embarrassing; I doubt that person would have said anything if I spoke slowly.
Lupus Suffers Have to Give Up A Lot
When someone is first diagnosed with Lupus, it often means making many lifestyle changes, which can vary from person to person depending upon how disabling their Lupus is. Some people can continue working; others cannot, so it is very individual. These changes can include dietary adjustments, regular medical check-ups, and the need for rest.
Understand: You Don’t Understand
It is hard to explain how you feel to someone who does not have Lupus. ‘If you don’t have it, you don’t get it,’ we can try to explain it to you, but it is hard to do that as Lupus is so complex. You don’t have to understand 100%. Just be mindful that
Lupus is a complex autoimmune disease that can affect various parts of the body, making it difficult to explain all the symptoms and their impact on our daily lives. Some things are more difficult to explain than others, especially continual chronic exhaustion. You may think you know what it is like to be exhausted, but unless you have Lupus, you have no idea just how bad it can be.
Making Family Days Out More Accessible Without The Stress
Spending time with my young nieces and nephews has definitely made me more aware of how quickly the cost — and planning — of family days out can add up. Finding simple ways to make experiences more accessible without sacrificing quality is especially important when Living With Lupus and needing to carefully manage both energy and expectations. One of the lesser-known options available to UK families is the Blue Peter Badge scheme, which can unlock free entry to over 200 attractions, including zoos, museums, castles and science centres, when accompanied by a full-paying adult.
Planning a day out with little ones?
Take a look at: Blue Peter Badges: The Free Pass Every UK Family Should Know About
It’s Not Just Women
While Lupus mostly affects women, it does also affect men and children. However, when people hear the word Lupus, they immediately think it is a ‘woman’s illness, which is forgivable as 90% of Lupus patients are women. Men (and children) can also get Lupus, and in the case of men, it can be more complex and more severe.
Lupus Has No Cure
Most people with Lupus have spent years researching it and looking at and trying things that may help. You can be sure that if there is anything that can help, I would have tried it. Please do not suggest a ‘cure’ that you read about, heard about from a friend, saw on YouTube, etc. There is currently no cure; if there was, the Lupus community would know about it.
If you want to learn more about the things mentioned above or better understand what it is like to have Lupus, I have included links to relevant Lupus organisations and charities below.
https://www.hibbslupustrust.org
https://lupus.net/living/awareness-2024
Lupus Warriors, please comment below something you wish people knew about having Lupus.
Discover more about my journey with Lupus by checking out these insightful posts:
- Lupus Symptoms: 22 Signs of Lupus You Shouldn’t Ignore
- ThisIsLupus:11 Essential Tools To Help You Self-Advocate Effectively
- 9 Important Facts for Family & Friends Of Lupus Sufferers
- How to Support Someone with Lupus?
- What Not To Say To Someone With Lupus
- Living with Lupus – The Lesser Known Side of the Story
Disclaimer:
The information and tips in this post are based on my experiences and are provided for general information and educational purposes to aid other Lupus warriors in finding their own coping mechanisms. They do not constitute medical advice for any specific medical condition or situation. This Wots Her Name Again? should not be used or relied upon to diagnose or treat a problem, disease, or medical condition.
Discover Valuable Resources for Navigating Lupus – Your Guide to More Support:
Rest assured, if you or a loved one are diagnosed with Lupus and need further assistance or information, these reliable and trusted resources can provide the help you need.
Lupus UK
Lupus UK: A Key Resource for Those Affected by SLE Lupus UK is a voluntary organization in the United Kingdom that crucially provides information and support to individuals affected by systemic lupus erythematosus (SLE).
Lupus Trust
The Lupus Trust (previously St Thomas Lupus Trust) is dedicated to supporting lupus research at Guy’s Hospital and raising awareness of
Hibbs Lupus Trust
A Personal Journey Turned into a Mission The Hibbs Lupus Trust, a registered charity founded in 2011 by the Hibbs family, was born from a personal journey with Lupus and a strong desire to create meaningful change.
