Women & MS: Fighting For Believability

By Devin Garlit

3 min read

You’ve been incredibly fatigued, in a massive amount of pain, your limbs are numb, vision blurry, you’ve been slurring your speech, and your thoughts are all clouded. This has been happening for a while, so you finally go to see a doctor. Upon describing your long list of symptoms, they do a basic exam and then begin to explain what you are experiencing is normal.

The dismissal of pain

They tell you that nothing out of the ordinary is happening, they might even say it’s in your head. Not only do you leave with no answers, but you start to question yourself and what you’ve been experiencing. This kind of situation is awful and, sadly, is extremely common for women when they are searching for an MS or any chronic illness diagnosis.

Examples of gender bias

You may be thinking, what qualifications does someone like me, a middle-aged white male, have to be talking about the discrimination that women face when trying to get medical attention? Well, aside from knowing many women who have faced such problems (including many who have expressed it in the comments and forums on this very site), we have access to various peer-reviewed, independent studies that prove that there is indeed a gender bias when it comes to the treatment that women receive.

So even if we put aside all the personal stories (and there are many), we have data that demonstrates that these problems exist.

Some examples:

One recent study showed that women were perceived to be in less pain than male counterparts who were experiencing the same amount.¹ I highlight this because pain is a big issue for me. It’s also a symptom that relies on doctors to believe what the patient is saying, so to me, a disparity here is indicative of the overall attitudes that are out there with regards to believing women.
One study reviewed patients with severe abdominal distress admitted to emergency rooms, it found that women, on average, had to wait 16 minutes longer than men to receive pain medication.²
A UK study found that with regards to numerous types of cancers, it took longer for women to be diagnosed than men despite similar symptoms.³ I highlight this one because, for many cancers, you simply need a doctor to believe you enough to get the proper imaging done to see if there is a tumor. So in my opinion, that’s an exceptionally egregious finding.

The impact of gaslighting

You may be familiar with the term “gaslighting”; if not, it is defined as “to manipulate (someone) by psychological means into questioning their own sanity”. Gaslighting is one more issue that women (though some men as well) face when trying to get the proper medical care that they deserve.

With many doctors not being willing to believe their patients, they will often convince them that everything is “all in their head”. This kind of activity is exceptionally cruel, in that not only does it mess with a patient’s mental state, but it can also prevent them from seeking an additional opinion.

You have to fight

I may look at the reasons behind these issues at a later date, but for now, I want to point out that these issues exist and they are common. This isn’t a problem that women are only perceiving, it is an actual issue that has been quantified. This isn’t just in anyone’s head.

I also want to remind everyone to fight for their health, fight for their diagnosis and treatment. You know when something is wrong with your body and don’t let anyone convince you otherwise. If you took your car to a mechanic because it was making noise but he said nothing was wrong but your car still made noise, wouldn’t you dismiss him and ask someone else? Doctors are like mechanics for the body, good ones can be really helpful, but not all of them are great.

People know their own bodies

Don’t be afraid to seek an additional option, and don’t be afraid to trust your instincts. Along with all of this, if you have someone in your life that says something is wrong with them, believe them, give them the benefit of the doubt. People know their own bodies.

Thanks so much for reading and always feel free to share! As always, I would love to hear about your experiences in the comments below! I’m sure some of you have experienced this and I would love to hear your story.

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lbesquerra Member
Gaslighting… I know this. This happened more when I was trying to get a dx. I had one neuro do some MRIs and other tests and blamed the lesions on something else and said that I just needed to go out and find someone and that he would get Alzheimer’s before I did. A year later I was dx by a different neuro. He blew me off a lot when I would tell him about new symptoms popping up, like it was in my head. I felt like I was finally treated with more respect when I left the state and went to an MS center with specialists. When they found me I was in an active flare and they made things happen to get things under control. But I had to fight so hard to leave the state and get that help. I don’t mess around with doctors or providers that won’t listen or problem solve with me, I don’t have the energy for it anymore. Just because they have an MD doesn’t mean they know my body better than me. They say that women can tolerate more pain, but idk if that’s true. I think that women don’t speak as loudly, sometimes we’re taught to keep things cool, and other times we don’t think people will listen. I know I just wrote a lot but those are my thoughts. 
1. Krista Member
 <inline-mention username="lbesquerra" user-id="4009354"/> I am not diagnosed but I am trying to find out what's going on with me and being treated like a criminal. I have maxed out my insurance in the past 4 months. When I see a new dr and they see that I have clean bloodwork and that I have seen cardiologist, pulmonologist, rheumatologist and neurologist they just glance and my papers and either tell me I am depressed or I have anxiety. Many diseases have been ruled out and it's easier for them to tell me that than dig deeper to really find the problem. Meanwhile my life has come to a stop. Talk about gaslighting. I don't even want to attempt another doctor just to be told I need therapy. I can feel all these things happening and all I want is to try to get better. I guess that's too much to ask. It's easier to be labeled within the first 5 minutes of meeting me. 
2. Lori Foster Member
 If you really suspect it is something physical, then please don't give up, <inline-mention username="Krista" user-id="4254725"/>. Somewhere out there is a doctor who will help. Have you considered going to one the bigger, nationally known clinics, like Mayo? Thinking of you. - Lori (Team Member)
belizeme Member
I believe it took so long for me to get “officially” diagnosed & on treatment was bc I was a nurse in a stressful job setting (ER), & my docs took forever to believe me-it was much easier to blame it on stress & hormonal disturbances. I always pushed myself & often undermined my own health by not being more assertive about my sx. When I finally fell face down I was believed! Amazing that it took almost 17 years of weird sx. before I was diagnosed. I believe it is easier now (I am 71 & was developing sx in early 70’s just as MRI machines were coming into Vogue), to diagnose folks. Referrals are made quicker-but it is imperative for us ALL to be assertive & proactive about our diagnosis & treatment plan. I was never asked what I wanted-I was just given steroids which made me crazy! Get involved, get your families involved, be informed! 
1. Lori Foster Member
 Great advice, <inline-mention username="belizeme" user-id="4088345"/>! Stress and hormones are far too often the go-to diagnosis for anything that can't be readily explained. I am sorry to had to fall on your face to get a diagnosis. You would think it would be helpful to already be in the medical field when seeking a diagnosis, but I have heard from many nurse and female doctors who felt their concerns were ignored because they had too much information and doctors felt they might be "looking" for something to be wrong. Best of all wishes! - Lori (Team Member) 
2. Devin Garlit Moderator
 Thank you <inline-mention username="belizeme" user-id="4088345"/>! You would hope that being a nurse would mean that they would believe you more, sad that that wasn't the case.
Tamara K Sellman Moderator
Devin Garlit nails it again. Thank you, this is such a big problem. I am grateful my neuro is female, middle-aged, and an amazing listener. She also referred me to a new primary care doc because my current one is a terrible listener (among other things). Feeling ignored, belittled, dismissed as "hysterical" or told that we're attention (or drug) seeking is not the kind of healthcare environment anyone deserves. Best wishes, Tamara, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> community advocate
1. Devin Garlit Moderator
 Thanks so much <inline-mention username="Tamara K Sellman" user-id="3970029"/> !
kwest51 Member
I kept hearing the same thing from my GP when I would visit. My fatigue and pain was just from growing older, being a woman, carrying a purse that was too heavy. And my GP was a WOMAN. It took me getting optic neuritis for a very caring ER doctor to have a CAT scan and MRI done, finally giving me an MS diagnosis. It was so frustrating for me to basically hear that my pain or discomfort or fatigue wasn't important enough to chase down a real diagnosis for, even though I had been complaining of it for years.
1. Lori Foster Member
 How awful to be so unheard, <inline-mention username="kwest51" user-id="4020523"/>, especially by another woman. I hope you have a different doctor now. Thinking of you. - Lori (Team Member) 
2. Tamara K Sellman Moderator
 <inline-mention username="kwest51" user-id="4020523"/> This is such a problem, and honestly, female doctors can be just as bad as male ones in this regard. I'm glad that ER doctor did their homework so you can at least seek treatment to try to keep things from getting worse! Tamara, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> community advocate
rodger Member
Hi Devin Garlit I think I was 'lucky' as when I describe my legs were tingle he immadly phoned a neurologist he knew and got me an appointment that week. When I went he (the neuro) said "I think I know what you have but I'll get a MRI to confirm my thoughts" so he made an appointment with the hospital for the next week. So I went and got three sheets of photographs of my brain (So if anyone says I'm brainless I can prove them wrong) and I took them along to my next nero appointment. He got the same photos by internet and with this he proclaimed that I have PPMS. That baffled me too and he explained it was Positive Progress Multiple Sclerosis and that was even worse when he described what it means. This was in the last week of SEPTEMBER 1999 Now I can tell him more.
f5hwo4 Member
I am so happy you wrote this article on the discrimination of women from doctors. I tried to get a referral to a neuro from my GP for 30 years. He kept treating me like a hypochondriac, I had two aunts who had MS he said it wasn't genetic. I couldn't switch doctors my husbands company had some off brand insurance and he was the only one that would take it. He finally gave me a referral when I was 55, he thought the pain and tingling in my arm was from nerve damage. When I got the referral I said may be they will test me for MS, he said even if you have it they can't do anything for you. After talking to me my neuro said he would test me for nerve damage and MS. He thought from all of my past symptoms I had MS. I am 69 and most women my age have been badly treated their entire life. I have a women GP now that works in the same group. The medical group had a rule that you could only change to a woman doctor. When one started working there I changed. Potter
1. Lori Foster Member
 <inline-mention username="f5hwo4" user-id="3977349"/> How horrible of your doctor to be so dismissive, even after hearing that you likely had MS, Potter. I am glad you were finally able to switch to someone new. It makes you wonder why some people enter the medical field at all. Best of all wishes! - Lori (Team Member)

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