What we want
One of the first things that we learned shortly after we were diagnosed is that there is one thing that we want that we may never have. We want understanding; we want others to know how hard it is for us to live with chronic illness both physically and emotionally. If we want to get understanding, we have to learn to convey our thoughts and feelings and getting frustrated isn’t uncommon, but it is not helpful either.
Many of us also find that our family and friends don’t believe we are sick or as sick as we say we are. What I have learned here is that this depends on the relationship we have with the person that we want to believe us. I have learned to kind of let this one go because it takes a lot more than conveyance for others who believe what we are going through. All you can do is express to them how you feel and how much you need to them to believe you and if they love you and care for you, they will come around. Being angry and resentful isn’t healthy for you or for your relationships. If the relationships you are trying to reach aren’t close ones, then you will know when you need to move on from those persons. You can also find comfort and support and create new friendships with others who struggle with the similar issues.
What we get
Not being able to convey your message, not feeling well and knowing that your life is getting more challenging by the day can lead you to feel sad, anxious and depressed. I would love to write this post from a third person but I know that I am equally saddened and burdened by my chronic illnesses. I go through my own bouts of depression where I feel sad, hopeless, and helpless more often than I would like. Being told that you are sick and that your disease will never be cured really stinks if you ask me. Your body is doing its own thing and you have lost control of the one thing in your life that you thought you could control. In fact, that thought alone is depressing but the reality is enough to plunge you into clinical depression if you let it.
When you go through a period of sadness because of a major loss – for example, a death, divorce or your new diagnosis – that is a loss and you grieve but you eventually get through it. You allow yourself time to mourn, to be angry and sad but eventually, you learn to accept your new reality. One day, you awake to realize that it is time to get past what you have been through and live your life again. If you don’t, then your grief will become depression and your physical health will become much worse.
Any one of us is capable of becoming depressed, myself included. I am, however, relieved when I find the strength to move past those moments. Chronic illness brings with it changes in mood because of the situation itself. In addition, to the diagnosis you have been given, you start to see changes in your appearance, your mobility and your independence and you start to feel like you are losing the game. Other factors that contribute to your changed mood include pain and fatigue, side effects of your mediations and treatments, and social pressure to put on this game face despite the difficulty to do so.
Yes, Me Included
I find myself at moments near tears without realizing it. I start dwelling and wanting to give up. Just like the next person, I don’t know how much more life can throw at me. I look at my children and I wonder if they realize how much I hurt or if they are angry with me for not always been able to spend time with them. I wonder how much longer I will be able to work and provide for my family. I look at my marriage and see how much it has suffered because of my illness. I look at my husband and I am reminded of how much he relies on me to keep our family strong. I know that he feels like I am the only one that can do that. My sisters went from having someone to lean on to me needing to lean on them. My mother needs me and I have to save my energy. I know family understands, but the idea that I am weak brings me to my knees. I feel weak and helpless to the point that I feel sick. I understand that these moments are acceptable and normal because I live with chronic illness and pain. I allow myself to have those moments and then I remind myself that it is back to business as usual. When I feel strong and positive, I remind myself of the all ways I can keep myself from becoming depressed again.
I have learned to be confident in my medical providers and that means being able to be open and honest. It is second after to being honest with myself and with my husband. Second, I have learned where my circle of support is. I ask and accept help and when I am able to give it back, I do. Third, I look at my health as I would my children’s health (well, at least I try). Moreover, I look at my self-esteem and I know what it takes to keep it up and I have set standards for myself when it comes to being tough. There are times where I have to remind myself that is time to simply “stuck it up” and move forward. Last, and most importantly, I continue to have dreams and to continue to work towards them. To me, continuing to be a productive member of society and being able to be successful is important and it is everything that I am and that I am capable of. It is second to being a mother and the fact is, my kids will grow up and won’t always need me, but I will always need myself.
I have never been the type to go around publicizing my feelings, my strengths and weaknesses. I was raised by religious parents who taught me the strength of modesty, but I have learned, on my own, that modesty shouldn’t make us weak. For a long time, I choose to stay quiet about how I felt and what my conditions were doing to me, but at some point, I realized I had to speak up for myself in order to live a somewhat normal life. I had to find answers and I did. After that, I realized I wasn’t alone, others had questions and someone had to speak up and maybe, that someone could be me. However, there are times, where I am ashamed of my feelings about my health, but what I am proud of is the ability to convey my thoughts and my perceptions in a way to allows others to say, “Wait a minute, that is how I feel and now, I know how to describe it” or “Wait a minute, I am not alone.” If what I have to say helps one person, then I feel useful, helpful, and hopeful. That is just another thing that I can’t let the disease take from me.