It’s not Lupus…until it is

The majority of what I have blogged about so far has related to real estate, but I wanted to talk about a completely different topic today: Lupus. I was motivated to do so because of Selena Gomez’s admission she has Lupus. Her disclosure caused some confusion for some – in part because people have little knowledge of Lupus, but also because she explained she had to receive chemotherapy to combat the disease. Chemo is only one of many treatment approaches that may be used to address the symptoms of Lupus, but chemotherapy, for most, is usually associated with Cancer and not Lupus.

Selena’s revelation prompted some important questions for those with little to no knowledge of the disease. Such as: Wait, you mean Lupus is an actual disease? It can be severe enough to cause extreme bodily trauma or death?

The answers to both questions are yes.

Decades have passed since Lupus was considered to amount to a death sentence or at the very least a significantly shortened life span. Much more is known now and medications have come out that help many people live with this disease that otherwise might have died decades back. But make no mistake about it: this disease can and does still kill and so there is a need for it to remain a critical priority among the medical community. There is a need for further study on the matter, investigation of origins, development of more treatments, and finding ways to provide options for those with the disease to experience a better quality of life. Most importantly, however, is the need to make it more of a priority simply to save more lives or lengthen them. However, bringing major problems that demand solutions to the forefront in today’s society only seems to happen through advocacy, knowledge, and increased awareness of the problem. All of this takes work, but even the sharing of knowledge with a great many people could make a huge difference.

Compared to Selena, I am the complete opposite of a celebrity. Any contributions I make through writing, donations, and volunteering are minimal at best. But small actions, repeated many times, by increasing numbers of people, can result in massive and unthinkable change.

Why else is talking about Lupus important to me?

When I read that Selena Gomez had Lupus I was astounded. Not just because she had an illness that I know is miserable and at times quite painful, but because it takes courage for a celebrity (and there are others that have admitted it as well, such as Nick Cannon, Toni Braxton, Seal, Charles Kuralt, Tim Raines, Flannery O’Connor, Michael Jackson, Mercedes Scelba-Shorte, and too many more to even try to name – some of whom have died as a result of their Lupus) to admit to having an incurable disease. Imagine how many others have this disease and suffer in silence, made to feel almost as though having this disease is a stigma versus an unfortunate reality that they won the Lupus Lottery instead of the Mega Millions. Believe me, if people had a choice between the two I think the Lupus Lottery would go bust. Who knows though. We do live in strange times.

Part of the secrecy, I believe, stems from the very real possibility that revealing the problem will destroy one’s career due to negative and often erroneous perceptions that the person with the disease might be too much of a risk to hire. Too sick. Too unreliable. Not sick now, but could get sick and stop showing up to work. The list of negative assumptions made about people with Lupus is likely a long one among those without accurate knowledge.

Yes, people can and do die from this disease, though with diagnosis and proper treatment a person may also go on to live a long (or at least longer) life. Just look at the accomplishments of those that have admitted to having it for proof the above described perceptions can be wrong.

This brings me back to Selena. She knew admitting she had it could harm her career, but she was also faced with the added pressure of having to contend with assumptions that something else was going on – like she was in rehab for drugs or what-have-you. She was put in an impossible situation, but she made the decision to talk openly about it and by doing so, as a person with a celebrity status, there are now many more people that know about the disease and are talking about it. It’s always been kind of a dirty-little-secret and it really still is one, but no person chooses to carry this burden. No person asks to live this kind of life. Ultimately, there are aspects of life we may control and ones we cannot.

I often wonder what would happen if many more celebrities came out as she did (more than the ones that already have because in all fairness there are a lot). It will obviously take quite a few more to really draw the right amount of attention to this problem.

How does it impact one’s life?

Another reason I wanted to talk about Lupus was because in my opinion is it one of the more devastating, misunderstood, and under-diagnosed diseases that is likely to prove much more prevalent in the future than people ever imagined as testing procedures and awareness in the medical community improve. The longer a person lives with Lupus, without a diagnosis and proper management of the disease, the odds of a reasonably positive long-term prognosis may decrease – especially when essential organs are under attack due to the disease, such as the kidneys (there are many variables that determine prognosis ultimately).

It’s Not Lupus. Maybe not, but is that assumption part of the problem?

There was once this little show on television called House, or according to imdb.com was originally titled House M.D. The big joke on the show (and I mean this sardonically) is that the patients featured would come to the hospital with acute, bizarre, life-threatening, horrible, and ultimately confusion-causing symptoms. They were then evaluated extensively and at some point a doctor involved in the evaluation would mention “Lupus” and then proceed to point out their reasoning for considering it as a possibility.

Hugh Laurie, who played Dr. Gregory House, would then dismiss the idea and state that it was not Lupus and sometimes give a brief explanation as to why he was discounting it. This was funny to a lot of people. Like a catch phrase or a joke. Except, in reality, there is little that is less humorous than Lupus. I’m not saying the show wasn’t good or interesting; I’m just saying it had the potential to raise awareness about Lupus (and that could have even been a goal that went a little awry), but really it made Lupus seem more of a rare myth-like disease that hardly ever happens – despite statistics that say otherwise. And that those doctors should look elsewhere for answers to confounding illnesses or medical problems.

I am embedding a YouTube video so you can fully get the gist of this before I move on to the more important content of my blog article today. So here comes the copyright notice: All rights reserved. Content does not belong to me. Fair use applies due to only partial replication of the work made available by another YouTube user that is being used for research and/or educational purposes only.

I recommend watching the video because it provides a lot of information about the symptoms, nature, and consequences of the disease, oddly enough, since it takes clips from many episodes – though it does not give a full picture.

Alright, so what is Lupus then?

If you are still with me, thank you for riding this one out and sticking with it. I know it is a longer blog than usual for me, but I appreciate the consideration of the content.

The strange irony of Lupus is that it attacks a person’s own body, using their own dysfunctional immune system to do it. Put as simply as possible, Lupus is an autoimmune disease (there are many kinds, but I’m focusing only on this one). People without an autoimmune disease likely have an immune system that helps to fight off infections and protect the person from disease or illness. Lupus does the opposite. A person with Lupus almost always produces what are called autoantibodies (The Lupus Foundation of America has a vast amount of information if you want to learn more about this disease and the associated challenges with it). So instead of having a protective immune system, the person’s vital organs and tissues are forced to attempt to fight off the damage in any other way possible that stems from their own immune system (treatment through medication, sheer luck, etc.).

As Amy Winehouse once said in a song with absolutely no relevance to this topic, but could still apply if interpreted only in reference to a few lines: “I tread a troubled track, my odds are stacked, and I go back to black”. The same is true with Lupus. The disease can leave you depressed, hopeless, in pain, and it can make a person lose sight of the possibility of better times to come – because deep down they know that even if the situation improves, which they do not really even think it will, it might only be temporary and they might still be treading that same “troubled track”. If that is the case and the person does not change course they will end up at the same destination. Diagnosis, improved treatments, and more public awareness could provide more options for people in terms of giving them more paths to choose to take so that maybe they are not doomed to the destination they anticipate and fear.

Can Lupus be cured?

Lupus cannot be cured at this time. It can be managed well in some, but not so well in others. It may or may not prove fatal for those that have this disease. One of the cruelest elements of Lupus is the symptoms range so widely, change over time, and appear to mimic other illnesses. Diagnosis and disease management are essential in fighting this battle.

What’s this talk about autoantibodies?

Autoantibodies come in more than one form, but this all gets very technical and so in the interest of keeping it simple, certain types of autoantibodies do not focus on attacking foreign invaders, viruses, and whatever else that could cause sickness; instead, they attack a person’s own tissues and organs. One week they might attack the heart. Another week or year, they might attack the kidneys. And they do not necessarily discriminate when it comes to the organs or tissues chosen. They may attack multiple organs and tissues continuously, or may take a break for a while and allow the person with the disease to into “remission” until or if it decides to again rear its ugly head. And more often than not it does.

What is the issue with diagnoses taking so long?

Lupus is further complicated by the fact that symptoms may come, go, and change over the course of weeks, months, and years. This can make it difficult to diagnose the problem because people often assume that diagnosis of an illness or a disease is based on correlating or predictable symptoms. If your nose is runny, you feel tired, and then get better in a week then the odds may seem high to you that it was just a cold. That would be a reasonable person’s assumption at least because it is a common illness with easily identifiable symptoms. Maybe it was a cold, maybe it wasn’t. However, as long as it passes quickly, it ceases to concern the person that had it.

The other challenge with diagnosis is that most people don’t really know what Lupus is, what it does, or what symptoms may suggest its presence. Doctors know about Lupus (at least some do), but as a person that has had Lupus for a very long time, I can tell you that you can go through ten-to-twenty doctors (if not more) before a doctor realizes the need to investigate further or even runs a test to determine if you have autoantibodies (which may not necessarily mean you have Lupus (odds are high though according to studies I have read if you do have them), but if further examination and testing supports the diagnosis then treatment may finally begin).

Diagnosis is a process, but it is one that has to be initiated by a medical professional and sometimes people must fight an uphill battle to make that happen.

A person might show symptoms as a child or an adult. I have read it’s more common among women and symptoms tend to come out in early to middle adulthood. However, I can tell you from personal experience children can and do acquire Lupus. How or why I do not have a clear understanding of yet. There are still many unknowns.

Why am I sharing this with people I may not even know?

I am by nature a somewhat private person. I have thought about writing about Lupus in the past, but the thought of admitting I have it to people outside of family and close friends used to make me feel ashamed. I made a decision that while I don’t have plans to wear a “I have Lupus” or “Actually, sometimes it IS Lupus” shirt at the moment, I am done trying so hard to hide the problem in situations where it is evident I am unwell and I am put in a position to make statements or give explanations that just really are not quite accurate. If asked (and it happens rarely because I think I do well to keep myself looking presentable even when I feel like my grams probably felt at 94 years old), I reply that “I’m just not feeling so great today”, but then the statement is followed up with a question about what exact sickness I think I have (unless I get lucky and get the “oh no, I’m sorry” response) and then I’m left with the option of telling the truth or a lie.

Decisions, decisions. I consider the situation, the person, and potential future consequences of making the disclosure before deciding what answer to give. Sometimes I say, “I’m not really sure” because while it is not the whole truth, it isn’t exactly a lie either. Because you see, when you have Lupus every sickness is attributed to it – whether it is really related or not. That’s another problem encountered with doctors that see Lupus on your chart.”Oh you have another sinus infection? Lupus.” or “Oh you have unexplained bruising all over your body and petechiae rashes again? Lupus.” So basically you get the opposite once you have this diagnosis than the one heard so often in the TV show House.

 

Can this knowledge help you or anyone else?

The one favor I ask is if one or two or three people read this that you share it with others, or share what you have learned at least. Please take away the lesson that we cannot always rely on our doctors to diagnose us accurately, quickly, or even at all sometimes. We have to advocate for ourselves and our loved ones medically. We know our bodies. We may not know what is wrong specifically, but we know when something is not right. However, advocacy is hard to do without knowledge and information. Sometimes it means you have to be assertive, change doctors, and take other actions that cause you to expend a lot of time and energy. However, speaking from my experience this is the only way I know of to get through it.

You may know someone suffering from Lupus who does not even know or suspect it. If you read until the end you may find yourself in a position to play a role in compelling that person to seek answers for acute or ongoing problems that could potentially suggest an autoimmune disease or something else that requires treatments or management. People with chronic illnesses need support from loved ones. We need to know people care. Sometimes the smallest actions of listening or expressing empathy and compassion can mean the world to someone else.

But you don’t look sick…

A common thing people with Lupus hear when they tell someone they have the disease is “but you don’t look sick”. With Lupus you can experience life-threatening symptoms that occur internally that few, if anyone, looking at you would ever pick up on and this is another reason why I think people ignore the disease, or do not really qualify it as potentially deadly. The worst and perhaps most hurtful thing you could say to people suffering from this disease is that they don’t seem or look sick. They are sick, but one of the reasons they may not look it is because of all the effort they put into pretending to be “normal” or “okay” or “competent” or “worthy”. I know many people that have absolutely no idea I have Lupus and probably never will because I do my best to live a good, balanced life no matter what life throws in my direction. Others with Lupus do the same I am sure.

What symptoms might suggest a problem?

Some symptoms to consider (though these are only a few and may also point to a completely different issue include and are summarized based on this site):

  • Going through bouts of fatigue (severe fatigue to the point it becomes a struggle to get out of bed or even think about doing activities that ordinarily would not be daunting). I cannot stress this enough because it sounds like the least significant of the symptoms, but in truth is it one of many that makes the disease nearly intolerable at times and people that have not experienced have no idea just how terrible it is. Also, the doctors I see have never suggested a means of reducing this feeling. I do find that when I am well enough exercise (running, swimming, squats, weights, or anything else) can actually increase my energy level but only when I’m in remission.
  • Headaches
  • Unexplained seizure/s – grand mal
  • Recurring inflammation
  • Fevers that occur on and off, and sometimes for no apparent reason
  • Recurrent infections (ear, sinus, UTI, etc.)
  • Swelling in different parts of the body like the hands, legs, or feet
  • Pain in one or both lungs when taking a deep breath
  • Unexplained rashes
  • Rashes that occur after sun exposure (not sunburns, but a rash or multiple ones)
  • On and off, or recurring loss of hair (that seems like it is more excessive than ordinary shedding of hair)
  • Problems with blood clotting
  • Ulcers in nose and/or mouth
  • A rash on the face (not all with Lupus get it, but there is one in particular called the Butterfly Rash that spreads across both cheeks and nose) that is a potential indicator of a problem
  • Feeling cold often and when others don’t, as well as having issues where fingers turn pale or blue in the cold (the technical term is Raynaud’s phenomenon)

Concluding remarks:

I used to worry that people would think I was a sickly and incompetent person if I told people outside of my immediate family that I had Lupus- especially in the business world. However, after years of experiencing progressively higher levels of work-related success, despite having Lupus, I decided to put the insecurity aside and write candidly in the interest of trying to make some small difference through my writing. My work track record proves I have managed well despite the illness. For others though, you might want to take it on a case-by-case basis as to who you tell. There does not seem to be a definitive right or wrong answer.

Yes, I do get extremely sick at times and I go through some terrible flares (these refer to periods of time when symptoms are constant and severe), but I take the management of my disease seriously and I do my best to live my life to the fullest. I go for long periods of time with mild symptoms that do not stop me from living an active life where I take care of two kids, work a full time job, and volunteer/advocate when possible. I go through times when I do not even think about the fact I have Lupus because I am doing and feeling well.

But with Lupus the tide can turn, and it can turn rapidly. When that happens and the going gets rough life becomes very challenging in every single way for me. The one positive I focus on when this occurs is I have been though it enough now to know that some of the things that get me through include being proactive in seeking medical evaluation or treatment based on symptoms, continuing to study and learn about the disease, live my life minute-by-minute when I feel as though the disease is taking over completely, and then watching with intense focus for the light to finally appear at the end of what can sometimes be a very long tunnel.

 

Thank you for taking the time to read this. If even one person made it through this entire article I would feel satisfied because then it means there is a possibility that somewhere out there it may someday help another person.

 

About Melissa Higgins
Client-centered realtor to assist with renting, buying, and selling needs. I work for BHG / The Masiello Group which has a wide range of services to assist in allowing me to help you realize your real estate goals. I serve all of Southern New Hampshire, including Nashua, Merrimack, Bedford, Manchester, Hooksett, Milford, Hollis, Pelham, Brookline, and many others. Contact me to talk about how I may help you.

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