Mercedes

You know many — there's kind of a stereotype you know that a lot of — not even a stereotype, I think it's factual, that many African Americans don't elect to participate in studies and clinical trials or et cetera. And like I said, that goes back to the Tuskegee Experiment. So, you know it's—it’s true. But at the same time, if you have faith and, you know, you have trust in the physicians or the individuals who are conducting the experiment, and you've read everything and you're knowledgeable about what the outcomes or proposed outcomes should be or will be, then there should be no fear. And so, like I said, I want to help as many people as I can so that's why I elected to do it as well.

It was pretty easy and straightforward in your options to vacate the study at your will whenever without reason or rationale. It's pretty straightforward like I said, but you do have a duty to read. You need to read all the fine print, et cetera. So that was it.

They just wanted to know when I had to go. Or if I needed someone to come with me or what have you. Or could we make a day of it? Should we go shopping? Should we plan, whatever. So, it really didn't interfere with my life too much. It was just that I was in a study. And that's it. Part of my life.

And what was your experience of some of the tests and processes you mentioned in terms of what it was like to go in for the trial?

I thought they were kind of fun for the most part. You know you'd have to do this adding test and subtracting test. And I liked that, it stimulated my mind cognitively. I thought they were pretty fun. The only part I didn't like would be the lab work. You know, having to be stuck. Or sometimes the MRI because it's challenging to stay still throughout the entire time, but that's it. That was only once every, I think, six months. I can't remember. It wasn't too bad.

But my experience was good up until the end. I ended up moving back home to the [LOCATION] area and I think they felt as if they'd lost touch with me, but just their persistence and—kind of a nagging to an extent—it just irritated me. And the tone in which they chose to speak was not very welcoming or positive and so that's why I elected to leave the study. But, I think, one of the individuals who was working with them, I didn't care for the tone that was presented. And that was it.

It's just the tail end when someone else was brought in the study. And I had worked with this individual for some part of the study, but just towards the end. I don't know if it was because she was concerned about me. I know that she said that, but there's being concerned and then there's the way that you speak, and you share that concern. And I didn't appreciate that. You know, I was an adult. I am an adult. And she's an adult. And so, there's a way to speak to people. And I didn't appreciate that whatsoever. I elected, because of her specifically, to leave the study.

I assured her that I have the medication. But then she calls back again. She said, “We can't find you anywhere.” Blah, blah, blah. Well, you have my information. You have my address. You have my telephone number. Call, leave a message, or what have you. Don't keep calling. And don't share or voice your concern in the manner in which you're doing it. That's what I did not appreciate. You know, she was kind of reprimanding me like I was five or something. 

Got it.

In any, you have the option of leaving whenever you choose to for whatever reason. And there should be no repercussions. So that's what I chose to do. 

Got it. What was it like for you to stop the trial?

It was easy. Thank you, but no thank you and left. Yeah. Nothing—you know— nothing more, nothing less. Nothing physically, nothing emotionally. I'm just not—you know—the stress was off me just by the fact that I didn't have to you know interface with that individual any longer. But I felt bad for the other individual with whom I worked with from the beginning of the study. And then I still had a positive relationship with my physician, you know [NAME]. With her, you know it was no love lost.

It goes back to the dignity and the respect. And hearing and listening to your patients, your individuals who are your participants. You really need to hear them. You can't just lump them into a group of individuals like, “This is the–the experimental group and this is the placebo group.” You can’t do that. You need to just treat them as individuals and as people. You can't just use them as, “This is my experiment. And, you know, this is what it is”. No, these are people in your experiment. And you need to speak to the people first. And just make them knowledgeable and make them aware of things that are going on. Being transparent is critical as well, because that's when people become frustrated when they don't know what's going on. So, like I said, initially, you as a participant have a duty to read. But then you can ask questions, use your voice to ask questions as well. And then, it's the clinicians in the study to be as transparent as they can be with regards to the study at hand.

I really wasn't too worried. I just wanted to know more about it. And I know that there are several types of MS and so I wanted to know what type I had. And so once that was confirmed, I felt a little bit more comfortable because it was not one of the you know, more severe types of MS. But I knew that I was in the best place for any care that I might specially receive. So, I wasn't too worried. As long as you're knowledgeable about what's happening with your body or what you can expect moving forward, you know, there should be really minimal fear. 

I was frustrated that she was listening to me-- my PCP was listening to me, but she wasn't hearing me. And I-- you know, you know your body well. You know your body best even though you may not be a physician. You know how you feel and how it impacts your daily living. And so to have to come back to her consistently, and make-- schedule appointments, and pay for those appointments was you know a little disheartening and frustrating. But eventually she caught on and she caught on with who I was as an individual. And so once I had appointments after having seen the neurologist and obtaining a diagnosis, she would you know, she would come to our appointments with articles. She said, you know I found this article that I know is pertinent or-- or you know relevant to your situation, and I know that you're really into research and you're really into reading, so I thought this might be a great article for you to review or to read. So I appreciated that of our interaction and her care, but it was frustrating-- frustrating in the interim.  

I think that my neurologists have been very receptive to the fact that, you know, as I mentioned before, I'm very in tune with my body. If I don't want something, I won't do it. And I think compliance is a big key to positive outcomes. And so, they are more-- they were more apt to listen to me wholeheartedly before making any suggestions if they made suggestions. But if I would ask them, you know I would more than likely follow suit with what they said and what they asked me to do. So, I think just knowing that my level of intellect, they were appreciative of the fact that you know I'm not going to make a decision that's going to negatively impact my-- my abilities.   

INTERVIEWER: Got it. So it sounds like they trusted you to make some of these decisions.   

Make the right decisions.   

Well, I'm fortunate to have a husband. And so, you know he's been with me throughout this process. And he's done some reading on his own. And he understands what MS is and how it manifests itself differently. And you can't really predict per se. And so just to have him and knowing that he would be willing to care for me if need be moving forward in the future is-- is a blessing. So I think, for the most part, that everyone's receptive to me having what I have. And so, if they needed to step in at any time, they would. 

And then I moved to [LOCATION], but once in [LOCATION] I found a stronger support group and that they were more that were African American [INAUDIBLE] better relate to in terms of having this diagnosis. But that was a larger population that of whom I could rely.  

INTERVIEWER: Can you tell me a little bit more about that experience of-- of being in the support group and the aspect you mentioned of having other people who were African American?  

I think that it was just beneficial because we could relate culturally and to the disease that we all had in common. And then some individuals were also supporters of individuals with MS. So I think just even just having someone to talk to. You know, just what were you experiencing? What are you experiencing and what you do with that with regards to that-- that disability or what have you, or that sign of that symptom? What do you do with that and how did that affect your daily work and-- and living et cetera? So just to have those conversations and in-- in-- in a manner where you felt comfortable was beneficial.  

You have to be your own best advocate. You have to speak up for yourself. And you can't let people tell you what they think that you feel or what they think that they know about you. You just need to voice your-- your concerns, voice your feelings, and voice your hurts, your, you know, positive feelings, et cetera. You just need to be your own advocate and be persistent and speak loudly and clearly so that you're heard.