Talking with others

Struggling with chronic disease can strain the fabric of even the best families and relationships. Like those recovering from any other disease, patients battling chronic inflammatory disease want and need to have support from family members. Building that support has proven easier for some patients than others.

Most patients have learned that the best evidence for the effectiveness of the Marshall Protocol (MP) is to get well.

How friends can affect your mood

Once patients have fully educated themselves about the Marshall Protocol, and committed themselves to it, it becomes important to point out that with this treatment:

• The positive reaction to the treatment is an immunopathological response.
• The goal during treatment is to keep the immunopathology tolerable, which is the best way to recover and it will also allow you to attempt as much a normal life as possible.
• Even while experiencing periods of immunopathology, the expectation is that Marshall Protocol patients will slowly begin having phases of feeling better during treatment.

Patients should aim to get their family to understand and support their decision to be on the Protocol.

As far as my husband and children are concerned, they have been supportive and understanding. It was a little embarrassing at first for my children to see me all dressed up in my hat, gloves, and glasses, and going out in public, but now they have gotten used to it. Yes, they get annoyed at times with the lights being dimmed, and windows covered, but that is usually the main complaint. My children, especially my son and my youngest daughter, play police, and help me not to eat or nibble on things that I am not suppose to eat. “They will say things like, “Are you suppose to be eating that?”, or “Don’t even think about it.” So I am thankful that they keep me in check.

LeAnne, 2006 LAX Conference

Having a sick spouse (or being a sick spouse) is a tremendous challenge to a relationship. The 2006 Los Angeles conference included a panel session with individuals who experienced the MP as a family member, rather than as the patient. They explain in their own words the range of their reactions as time went on – from skepticism to devoted partner. This particular session may help a partner understand what he or she may expect and how to weigh the value of this treatment. It is available by request from the DVD order form.

My husband Phil spoke at the LAX conference about the trials and tribulations of being an MP support spouse. One of the things he said was that he decided early on that he would always try to “cut me some slack” because he knew how hard the MP would be, physically and emotionally. He calls it the “free ticket”….

Let's say I am having a particularly bad day, herxing terribly which makes me either bitchy or weepy. I get a kiss on the forehead and a pat on the back – the symbolic bestowing of the “free ticket”. Then Phil will either (a) leave and go play golf (b) watch some kind of sporting event on television, or © work through a few more pages in his sudoku masters puzzle book. Once he immerses himself in one of these activities, he is totally removed from the reality of my situation. He just mentally, and sometimes physically, goes somewhere else. He takes a break from all this. When he comes back, physically or mentally, we just start fresh.

Phil is motivated is motivated by the idea of being part of history in the making, the creation of a new paradigm in the treatment of Th1 disease. I say it’s a lot easier to be excited when you’re not the one herxing. For my part, I try to remember to tell Phil how much I appreciate his support.

Carol, MarshallProtocol.com

In order Donna (DNStog) reached out to the following people about the Marshall Protocol (MP):

1. My husband and family ophthalmologist, who is also a family friend. They knew of blindness threat from uveitis and potential death from sarcoidosis. Both supported my efforts.
2. Daughter and sister were the next to be told, because I knew I would periodically need their help. Daughter had to help cover the windows and skylights of our new kitchen and garden room. My sister had to pick up the slack for emergencies with our parents and to tell the hospital and my husband to resuscitate me in case of an emergency brought on by cardiac immunopathology.
3. My sister is my backup emergency contact. However, she has been more interested in the MP and how it works than my husband.
4. Elderly parents were told next because I would not be able to see them as often.
5. Close friends who I occasionally lunched with were told and eventually extended family: cousins, aunts and uncles. All have been quite supportive and a few were interested in how the treatment works. These were all cousins who are a few years younger than me and also suffer from chronic inflammatory diseases.

In response to a question about getting negative letters from family members, JRFoutin replied:

Take heart. Family may be infected too, and much of the rage they feel is merely the ugly step-sister to the despair you feel. Close the letters and neatly file them in a “to be opened when we are both well” file….

One of the hardest pieces of advice I got from Aussie Barb and other wise souls on the board was to get well first, then work with family…. I have a long way to go before I can hope my family will accept what I am doing, let alone accept it as a hope for their future…. It is painful for me to watch them suffer needlessly, except for want of a better opinion of me or science.

I've finally come to the point that above all, their agency and choice is theirs. I have done what I can in a short period of time and the evidence for my improvement will emerge over time.

Diana, MarshallProtocol.com

In response to a question from an MP patient whose husband complained the treatment was disturbing the family, particularly her need to avoid the outdoors, Knochen wrote:

The rest of your family have the whole outdoors available to them if they so desire. You don't. How does this make them the victims? It sounds to me like your husband is in a massive state of denial and would just rather have you “be better” so he didn't have to make any changes. Sure, kids should have a mother who isn't sick, but in this case they don't. It sounds like a typical response of denial, anger, bargaining, depression and acceptance. Your family is bouncing around in the first 3 right now. They'll get used to the new way after a while; you need to stick to your guns.

Frankly, I think your husband needs to grow up and accept his responsibility to you and your kids by getting you well again, no matter what it takes. (I seem to recall something in my marriage vows about sickness and health, better or worse. Or does he just want to skip ahead to the last part of that line? ) If you were to give up the MP, what would be the outcome? A few years of “normalcy” while you decline and eventually crash? Would he tell you to not go onto chemo if you had cancer because it might upset things? Th1 can and does kill people, and it does it in a slow, ugly, painful way. Maybe he just hasn't understood how serious your condition is. Goodness, how inconsiderate of you to be ill.

People, especially kids, will live up to your expectations of them. Here is their chance to step up and help Mom get better. Everybody in the family should have a part to play if they are over the age of four. Every little bit helps, and then “we” are fighting this disease, not just “you”. In the meantime, don't concentrate on the things you can't do, concentrate on the things you can do!

Member post, MarshallProtocol.com

Sadly, some people in your life may not want you to get well. For example, sometimes a partner or close friend can not tolerate change. Consciously or unconsciously they may undermine your efforts. It will be up to you to quietly persist, knowing that your recovery can only lead to a better outcome for both of you.

In an extreme case, there may be someone who is literally toxic, even socio-pathic. “Learn to value yourself, Learn to say No!” and if necessary, Remove yourself from the influence of any such person.

Because of memory problems, my mother sometimes forgets that I have to feel bad in order to feel good. After I remind her, she seems to understand. My dad and I have become even closer since we both have been getting well together. Even my close friends understand what I must go through and see that I am getting better. Just knowing that my Uveitis is 99% resolved has been proof enough for all of them.

DNStog, MarshallProtcol.com

With respect to promoting the MP, the best course of action MP patients can follow is to simply focus on their healing.

My suggestion, which I have used in other scenarios for patients involved in an innovative therapy, is to let their improvement induce questions from family and friends.

If then they are interested, they can be referred to the appropriate medical practitioner for assessment and therapy. In my experience, relying solely on D panels leads to missing a significant number of patients with Th1. Lab tests must be interpreted along with clinical assessments by a knowledgable MD. Just having a GP order under pressure a D panel will not lead to a true diagnosis and treatment.

The most important role a patient doing the MP is to support their healing and not to promulgate the therapy. That is the role of MDs and researchers and from history we all must be patient and not surprised by the initial reactions by the status quo.

Greg Blaney, MD

[If strangers ask about why I am wearing glasses] I just explain that this is a very exciting development in the treatment of my illness because it works. In fact it's so new that not all the docs understand it yet, and that I can't wait to get well so I can live a normal life!

Jillian, MarshallProtocol.com

Personally, I don't try and explain everything to everyone who asks about my health. I formulated a general response and just don't go into details except for a few family members. It seems others don't quite grasp the situation and maybe you are interpreting their confusion as lack of caring. And that is probably not the case at all! So, give a short answer; maybe tell them the treatment side is still being explored at this time. Then you can relate more once you are implementing the treatment program you want.

Betsy G., MarshallProtocol.com

Very few people in life really want to know all the details of someone with chronic illness or their treatment. I find it best to simply say, my illness is being treated by a new protocol. That seems to be a clear and simple statement that makes them happy, and myself less tired *grins* I don't find it necessary to debate with “doubting Thomases”, it is stressful and tiring.

Hrts, MarshallProtcol.com